Itch Relief…

The “ice pack disease” … *smile*

Someone should market pajamas with ice packs built into the sleeves. Maybe include a drink holder so you can have a nice sip of cold water when you wake up itching.

well, i officially lost my job because of the itching now…asked for three afternoons off to see my dermatoligist for a battery of tests and was told no way. i had to choose my health. i mean, honestly, he can’t see me otherwise until november, and as we all know, months in BRP time is YEARS…molly, i’m in nashville too. have you ever had creams on the arm before this? my derma, dr. zanolli, is great, and he told me about creams, but i thought he was crazy. maybe i should ask him about them now. btw, how expensive is it? i don’t have insurance, and now, have no job either!! 🙁

sb,

My dermatologist Dr. Byers is in Franklin at the Vanderbilt Walk-In Clinic. He is quite familiar with this problem.

I’ve tried acupuncture, chiropracty, a spray called ‘Itch No More’ on the internet (which worked about half the time), and Clobetasol, a prescription cream which worked about 20% of the time, but no other creams. The thought of using capsaicin, menthol, thalidomide, etc. makes me cringe. Ice was the ONLY thing that has worked. Can’t wear long sleeves any time of year (mine is not seasonal and lasts all year). The Zonalon so far is about 90% effective.

Molly

ouch. expensive. okay, for posterity. can we all (whomever is still with us) PLEASE help us all pinpoint who is on the same page by answering some questions? i’ll go first. maybe if we find all the COMMON things, we can work on this together! Just cut and paste questions if you want:

1. We all seem to use computers (duh.) I notice worse symptoms when using the computer for long periods of time (I’m an author, too, so it makes it tough NOT to use it). Might have something to do with positioning of neck. Anyone else notice this?
2. I’ve tried no carbs/sugar now for a few days, and noticed very little difference. Anyone notice that sugar or carbs makes symptoms worse?
3. I do notice if I drink too much caffeine, my itching is significantly worse. I’m talking half a pot of coffee, though. Anyone else?
4. Can’t figure this one out, but it is a factor for me. Not a trigger. I uriniate much more frequently when I have an itching episode. Anyone else?
5. Like our lone “guy” on this forum, I too, can use NO creams, gels, emoillents AT ALL on the affected area, or it will make the itching much worse. Who else finds this to be true?
6. I have followed internet and doctor instructions to keep arms covered in sun (hard because material makes it itch a lot of times so I just stay inside a lot ) 🙁 but I truly don’t know if the sun makes it worse at this point or not. I know for me and many others we find this to be seasonal (except Molly) but is it truly the sun? Thoughts? Experiences?
7. Speaking of seasonal, I start itching in April, usually subsides in November/December. Some years are worse than others, and sometimes the itching moves around a little. Are we all on the same page that this starts in late spring and usually subsides in winter? (Except Molly 🙂
8. I have had MRIs and have been diagnosed with cervical and thoracic issues on my spinal cord. They have told me I could have had it since birth, or it could have been from an injury. Either way, I have neurological proof that itching could be caused by problems with neck/spinal issues. Do we mostly all have some sort of damage to nerves/neck/spine of some sort, and if you haven’t been diagnosed with this part, is there an injury you can think of that might have caused a problem you haven’t had a doctor find yet?
9. My neck hurts HORRIBLY when I’m either about to itch, or itching. It’s like a dull ache that gets worse and worse. Whose neck also has pain associated?
10. This sounds strange, but, what is your usual “sleep” position? I know sometimes I think I sleep a certain way but wake up quite differently. Of course, when we’re itching, I’m sure we sleep the only way you can: On our side that itches with an ice pack firmly placed against the area! I find myself sleeping on my stomach often otherwise, and have been told this can be a truly bad way to sleep as far as your neck goes. And I do notice if I adopt this position, I usually wake up every time in the middle of the night itching and my neck is in major pain. Anyone else a stomach sleeper?
11. I think I have tried every drug (except Thalidomide, which is 4,000 bucks a month, and is experimental with one case study so far touting its success after only 2 months usage) and almost every topical OTC and allergy medication there is. I know I named them earlier, but again: Neurontin, Lyrica (even 75 mg 3 x a day did NOTHING but make me a zombie), Amitryptilene, Hydroxizine (just knocks you out), Benedryl (doesn’t even touch the itching), Zoloft, Homeopathic Pills, Vitamins of all shapes and sizes, Klonopin (1 mg and I’m still wide awake itching), Cymbalta (just makes me crave sugar!), Benedryl spray, (you’re right,mark, that the cooling one works for about 5 seconds, and you think you’ve found a treatment and then the gel stuff makes you itch worse, I think), creams, vaseline, alcohol, witch hazel, neem oil, something a friend sent from India that looked like newborn baby poop and made it itch worse (she meant well anyway), and so on. Who has tried any of these and found relief? Who has tried something else and found COMPLETE subsiding of itching?
12. If I wear a fabric or sleep on sheets that have been dried on a dryer with a fabric softener sheet or even liquid, I find it triggers itching. I think honestly it’s not because I’m allergic, but because my nerves are hypersensitive to ANY chemicals at all. Who else finds this to be true?
13. I noticed that Christine, who started this whole thing (which I must thank her for) is a knitter (far better one than me, too). I knit usually beginning in late summer, and I have found this can make itching worse. In fact, anything REPETITIVE with my hands does. Anyone else find this to be true? Also, when I carry a lot of heavy objects (even a bunch of grocery bags in), sometimes that can trigger an itch. Anyone else?
14. If I’m reading with two or more pillows propped up, there it comes. I think I read on here someone else has the neck positioning problem also, where it triggers itching. How many of us find this to be true?
15. Obviously every aliment gets worse with stress. But for the women on here, do you also find it is worse right before your period? Also, for everyone on here, do you find in humid conditions it is far worse as I do? If you also find this to be true, could it be that, like with arthritis, rain can make our necks hurt and cause us to itch?

Okay, that’s it for now. Feel free to answer and add any questions. I really do believe in power in numbers, and I think together, since this subject isn’t discussed enough obviously in the medical community, maybe we can help each other.

Hi sb,

Good questions, and lots of similarities with lots of folks’ posts. I’ll jump in first:

1. I’ve found ANY thing I do with my neck position being ‘down’ causes itching – the computer, beading, reading, sleeping… I have to make sure my head/neck is always in a slightly ‘up’ position. Even the neurologist said “I bet it’s the worst when your head is down like this.” (Because of the location of the stenosis and bone spurs).
2. No food or beverage seems to make a bit of difference to me. Besides, I’m not about to give up my coffee or my wine!
3. No caffeine difference.
4. No urination difference.
5. Putting on lotion can start an itch, but goes away with ice.
6. Heat on my arm (sun or hot water shower) hurts and can start an itch.
7. Not seasonal, but all year for me.
8. Had the MRIs – confirmed stenosis (narrowing of the column), osteophytes (bone spurs), compression of the nerve bundle at C5-C6, and a congenital deformity (may or may not play a part). Plus I was in an auto accident 4 or 5 years ago that snapped my neck around a lot. (Passed out at the wheel from shingles pain medication and went down an embankment into a creek)
9. My neck has always hurt – mechanical/bone deformity.
10. I sleep on my side, per neurologist’s suggestion. I don’t, however, always wake up on my side.
11. Tried Chlobetasol, Omega 9 oil capsules. So far Zonalon (doxepine hydrochloride) cream, a nerve agent, is working miracles on my arms. I can even scratch an itch on my arm now (unrelated) and NOT have it turn into a 2-hour itch session! Just like normal people!!
12. Haven’t worn sleeves in 3 years. Have to roll up my short sleeves to my shoulders, looks ridiculous, don’t care. Recently bought all cotton sheets because the others made me itch.
13. I think it’s probably more an issue of neck position than repetitive motion with your hands, but who knows?
14. Again, neck position. Wrong position for me ALWAYS turns into an itch.
15. I’m 52 – N/A! And humidity – I’m from Georgia, now in Tennessee. Humidity is all I’ve ever known!
16. Does manipulation of the area help? i.e. neck massage? For me it makes it worse.

Also, occasionally when I completely give in to the itch and SCRATCH myself nearly to death, the itch converts from an itch to shooting needle pains that are so powerful that I JUMP like someone has stabbed me. Nothing, not even ice helps then. I just have to gently ‘pet’ the arm, like a cat, until it wears itself (and me) out. Makes me think I’ve completely overstimulated the nerves, like the more you scratch the more you itch – cumulative pain.

Molly

Hi Mari Anne — I too can’t wear a bra. A BIG PROBLEM! Anyone else?

I don’t see being unable to wear a bra a problem… but I do have a hard time wearing necklaces. They make the back of my neck itch.

I am interested in the comments about bras and topical creams. I put Eulactol cracked heel balm across the bra line across the spine area. and it makes all the difference. I hadn’t thought to put it on my arms but I saw advertising that they are putting out a skin lotion. If I put the heel balm on every day (and it is not easy from that angle!), it really does help with fabric. If you can get someone to rub it in, it is even better.

Let me contribute
1.When I sit down at the computer or sit to watch some TV the itch starts, that is if it is being quiet then.
2.Sugar nor caffeine seem to make a difference.
3.Urinating – do not notice anything unusual
4.I have tried every conceivable cream, gel or whatever and it only tends tomake it worse
5. SUN is a BIG one for me. It makes it 100 times worse. Love the sun and tanning, but can not get in the sun at all. I was tested for some kind of solar allergy, along with a battery of tests, but was not allergic to it.
I use to have this only in summer, but now it can be at any time of the year. It is so weird, I recall when I first knew there was something different about this itch. I was at an Octoberfest and my left forearm started to itch. I scratched it so long and hard I still have the scars from it.
6. I do have neck and cervical problems. I also think this stems from it, but can’t explain the seasonal thing, except I have been told that arthritis and other symptoms appear to get worse in spring or fall.
Have not associated neck pain at or about the same time as the onset of itching. Just have not paid attention to it, but will start. As far as sleeping, I have not clue, because my Dr. gave me ativan to sleep and I SLEEP! It is a wonderful relief except I will probably become a junkie which is better than itching at night.
7.No prescription or topical medication and I mean NON has helped me, except , of course, for the car wash wand. Excluding thalidomide which the Dr. says he can not get for me anyway. Am dying to know if this will work for any of you, if you can get it. The best is free frozen water and it is what I hear most good about.
8. Yes, carrying things makes it worse. I can not even carry a purse over my arm or it starts.
9. Stress and high humidity make it worse , much worse.

1. When I’m working on the computer my neck definitely hurts. It doesn’t seem to start the itching though.
2. Haven’t noticed about the sugar or carbs
3. I only drink 2 cups a day so I don’t notice if this is a factor.
4. No difference in urination
5. No I use shea butter on my arms because of all the itching I do it has changed the texture of my arm skin so I try to smother them with shea butter, it does not make it itch.
6. I don’t find it to be the sun directly but my arms definitely have a ‘prickly’ sensation if I get too hot. I too don’t believe the sun affects me. I definitely can’t have my arms touching things like my husbands arms for instance when we are laying in bed beside each other. His hairy arms make my arms go crazy.
7. Yes definitely, my itching starts around June and goes until late December. The itch moves around the arms from year to year, this year it is predominantly my upper left arm but both arms down to the middle of my lower arm can get going as well. This year my neck and upper shoulders have been a little itchy at times. I also get a tingling (like pins and needles at times at the back of my neck)
8. I have had x-rays that show a narrowing in between the c5-c7 spine. I am waiting on a phone call from my doctor as to when I get my MRI. My back has always been killing me especially my neck and just below.
9. As above, I’ve got neck pain and my mobility in my neck is pretty bad, I can’t touch my chin to my chest.
10. No I don’t sleep on my stomach, I used to when I was younger but it hurts my neck too much and also my chiro says sleeping on your stomach is really bad for your neck. I usually fall asleep on my back but sometimes I sleep on my left side, with a pillow tucked right into my neck.
11. I am presently on Gabapentin (Neurontin) I take 300mg twice a day. I think it keeps the itch at bay. I don’t like being on it but I’m afraid if I come off it the itching will start in furiously. I do get itching episodes about 3 – 4 times a day, being on it but it is not as bad as it has been. It seems to be mostly in the afternoon and evening. I have had success with ICE menthol jell, it works a lot better if you keep it in the fridge, it even states on the jar to keep it in the fridge, I brought it with me when I was on holidays but didn’t have a fridge to put it in so it didn’t work well when it was warm. If I don’t have ice or ICE and I’m desperate I run my arms under cold water, it works a bit and takes the edge off a bit.
12. I haven’t noticed the fabric softner thing but I have to have the sheets over our Comforter because the material of the Comforter bugs my arms.
13. I’m not a knitter, so can’t relate to this one.
14. I know I have to position my pillows properly or else my neck hurts and the itching starts. I have 2 pillows one fluffier one on top of a flat one.
15. We don’t have a lot of humidity in Calgary Alberta so I can’t say it’s humidity that makes it worse, I haven’t kept track if it’s worse close to my period. We don’t get a lot of rain here also so I can’t blame it on that either.

I am a 43 year old white women and have had kids, just thought I’d throw that it because it seems like alot of use are white women. Any body else here with itchy arms that isn’t white or a woman. (That probably wasn’t very politically correct but hey we gotta get some answers 🙂 ).

Susan in Calgary, Alberta

thanks so much for responses so far…it helps to know that many of us share the same triggers and treatments. now on 5 1200mg capsules of flax seed oil. waiting…still waiting.

when my “itching” began in 1999, i too remember feeling it was a different sort of itch. i knew it wasn’t normal. at the time i was running outside every morning in sleeveless running bras and using light weights for working out every day. very strict very low fat diet too. i’m convinced along with the spinal things i already had that i didn’t know about, that year of running every morning with direct sun exposure with no protection (and no sunblocki’m embarrassed to report) helped to push this into play. hindsight…

oh, for the record, i’m caucasian, never had children, 29 years old, a vegetarian of 13 years, and no longer follow the ridiculously low fat diet or strict exercise routine i once did.

oh — and my father used to wake up in the middle of the night going crazy itching both arms. for years. he thought it was his seizure medication all along. i wonder if it’s hereditary…

for michael, i truly hope for your sake that it is just stress. this “disease” is really a doozy.

I keep forgetting to mention this. I had to stay out of the sun for at least 2 months before it made a difference. I never wanted to believe the sun exacerbated it and I would stay out of it for a couple or 3 days and no relief and then tried longer and in about 2 months it started to quiet down. I think the nerves are going crazy with this spinal thing and the sun certainly damages deep and really kicks it off.

I’ve been a subscriber to this website since it’s first posting about a year ago and this is what I’ve learned and how far I’ve come in one year. First of all….think NECK. Don’t think arms. BRP is caused from nerve entrapments in the cervical portion of the neck. Putting ice and other creams on your arms will only make the problem worse. If you feel you need to put ice on anything…put it on the back of your neck. About a year ago, I was an itchy, bleeding mess. Now, I have gotten this problem under control, but it isn’t an easy cure. You have to make major lifestyle changes. First of all, the number one cause of this problem is computer use. I went from full time computer use to limiting myself to 30 minutes a day…max. I take breaks during those 30 minutes and I am very careful of my posture in my computer chair. If I really need to be at my computer longer than that, then I break it up into small time segments throughout the day and I will expect itching that day. I also have learned to not lift heavy things. That makes it worse too. I go to physical therapy 2-3 days a week and I also go to acupuncture 2-3 days a week. After I got the itching under control and my arms healed up I have been able to apply sunscreen to my arms daily and that helps also. Don’t get too worked up over the “seasonal” part of this condition. It is seasonal due to prolonged sun exposure. It’s kind of like a delayed reaction to spending time in the sun in the summer months. The sun just irritates the nerves that are already being affected by the BRP. And, yes, some people have the itching year round. When my condition was at it’s peak, I had the itching year around also. I have not had a neck injury, but my x-rays show some cervical disk damage and spurring. I feel it is caused from my genetics…weak, long neck….in combination with lots of computer use. I started both the physical therapy and the acupuncture at the same time about 1 month ago after I got my computer usage down. I found that you have to stay committed to the treatments. You can’t expect results the first week. I am almost all the way itch-free now. My physical therapist spends quite a bit of time manipulating my neck manually, trying to loosen up all the muscles and he does a lot of traction manipulation also. I have a much larger range of motion now and my neck pain is gone. (I used to have a LOT of neck pain.) I do home exercises to help the condition and I’m hoping that eventually my neck will become strong enough to have healed my neck problem and I won’t have to spend so much time at PT and AC. When I tried to drop down to 1 day a week at this point, the itching started to come back. I’m hoping that by December, I’ll be able to drop down to 1 day a week or on an “as needed” basis. I chose to tackle my treatment plan with these two options because they are drug free choices. I really didn’t want to take a powerful nerve blocking drugs (or steroids) if I could get around it. If I can’t get this under control with these two methods then I plan on seeing a cervical spine specialist in Seattle – about 4 hours from where I live. I know there are some surgery options and they have come a long way in that field using lasers, etc. in order to take a lot of the risk out of the surgery. If I have to go that route, I will. I do have medical insurance, but even just keeping my co-pays up is costing me a lot. If you don’t have insurance and you can’t afford these options, then start by getting off of the computer! That is the hardest lifestyle change I have made so far. It was my livelihood for years, then it became my hobby center (photography/video), but I had to change my hobbies and my career choice. Now I spend time “moving” which seems to be the best thing I can do for this condition. Do not do crafts, needlework…anything which causes you to hold your neck in one position for a long period of time. Oh, and another thing I have done which has helped a lot is increased my time sleeping. I am very careful to get 8 hours of sleep a night and if I can’t I try to lay down for a while during the day. I purchased one of those therapeutic neck pillows and that has helped also. The reason for the sleep is not only to give your body the best ammunition it needs to heal, but primarily to give your neck a rest holding your head up all day. Gravity is not your friend. That is why traction (lifting the skull up off of the spine) treatments really help. I’ve been long-winded I know, but if this posting can help others, then it was worth spending my allotted 30 minutes of computer time on it!

Not to throw a wet (icy?) blanket on the subject, but….
I think we need to keep in mind the difference between the cause and the effect…. AND the fact that there are numerous causes for this one effect. The effect, we’re all agreed on, is the seasonal itchy arm thing that is worse at night and feels better with ice.
The causes, according to the web sites I’ve seen, are numerous. One of them is spine/back/neck oriented. One of them is adult-onset parvovirus B19 which I had. For those with the former cause, I’m sure it makes sense to treat that cause (less keyboard time, ice on neck, etc). For me, with a different cause of this condition, and having NO neck/back/spinal cause, I’m left to treating the symptoms. Others may also be in my situation.
I don’t mean to diminish the value of Kathy’s excellent emails. I’m just trying to say that there are a few different causes here that lead to the same effect. If your cause has been confirmed, then Kathy makes a great point to attack that rather than the symptoms.
Thanks! Hope this makes sense.

To Mari Anne, That is the most positve message I have ever read on this web site – thank you so much. It pulls it all together somehow. Thanks also for checking this out for all of us – you are wonderful and so is the lovely Swedish doctor!

I’m not alone. Been itching for about five years on forearms. I am a white male, fair skin, blonde. I got the same response from all of the dermatologist as above people. Ice is the only thing that i have found that works. Me and a coworker who sits next to me have had this very problem. We were told that we were just crazy. Mine starts in August and generally disappears in November-December. I am going to try Mari Anne comments.

Hi again —

I DON’T want to be a wet blanket at all, but I just want to report a few things from the 7 years I’ve been dealing with this:

I actually tried Capacsin when my doctor prescribed it in 1999. It didn’t work for me. It’s great for arthritis patients, but this is a disease that is based on 2 factors: cervical neck issues AND nerve damage from sun exposure. It’s a cream that works on the nerve ending where the itching is, not the cervical issue that is also at least 50% of the problem.

In a complete layman explanation (for me and everyone else), here is what happens with Capacin: It burns like fire (the peppers ground up in it), trying to basically shock the nerves into kind of a “chicken fight” to numb them from feeling itching as intensely. You know, “Oh you’re going to itch are you? We, we’ve going to make you BURN! And that’s much worse than sissy itching! We’ll make you burn so much that you’ll think itching is no big deal at all!!” The problem being, yes, I was on fire nearly, but I still thought itching was far worse. And it actually triggered itching episodes for me. I also took Amitryptilene at night at the same time, and it made me sleepy, but nothing made me sleep through the bad itching episodes.

I looked on the internet and found a bunch of medical journals that report the same that happened with me, that it wasn’t useful for their patients.
(http://matrix.ucdavis.edu/rxderm-archives/brachioradial-pruritus)

Just like after I tried Neurontin and it didn’t work, I ended up finding reports from doctors that no relief was found for their patients with that, either.

I’ve been on Lyrica recently, up to 75 mg 4x a day and the only thing I can report is my trips to the freezer to get more ice packs are stumbled and jumbled and I seem not only drunk, but (I’m a write by profession!) I can’t make words as easily. Vocabulary? No. I use the word “thingie” for everything when I’m on it. It’s terrible. AND it’s only a TREATMENT for the nerves (that doesn’t work for me) not a CURE. Which means taking it the rest of your life possibly. Ugh.

With all due respect, I totally understand what Kathy K has to say about the subject. BRP is in the neck, the underlying issue. But it’s also from photosensitivity. Damage to the SKIN. And hers are suggestions to control symptoms. Her itching hasn’t been cured. And in the interim, she’s had to quit a job that included using the computer or carrying anything heavy at all, etc. etc. What other jobs are there?

I’m a puslished author. That’s my career. I can’t stop writing. Even if I could, what job would I get? An office job? I would have to use a computer. A nanny? I would have to carry children a lot. A waitress? Again, carry heavy things. I don’t think I could honestly do anything I am capable of doing and follow the twenty minute computer and no lifting policy.

I can try to correct the position I sit at the computer to help alleviate the symptoms. I can try to stay out of the sun. But as she said herself, it’s never cured the disease, only helped the symptoms.

The ice packs on arms numb the immediate itching that is on the arms. That’s the only reason I use them. I use aleve, and a mixture of heat and cold for my neck pain already. But as we all know, this itch is so unbelievably painful and immediate, we can’t just ignore it and put ice somewhere else. (http://www.thedoctorsdoctor.com/diseases/brachioradial_pruritis.htm)

The worst itch I have ever had I was nowhere near a computer for days. And I hadn’t carried anything at all. I was on a roadtrip. So I’m sure it had to do with how I was holding my neck. But I truly believe we can try better to control how we hold our necks and our posture so that we don’t have to cease these activities.

But, if it makes any of you feel any better, just as we are, doctors are truly CONFOUNDED by this disease.

( http://www.vgrd.org/archive/cases/2001/brachioradial/brachioradial.html)

Sure, there are ones who are certain they have a great treatment, but how much of that is due to the fact that the patients haven’t come back after the doctors’ bright ideas to control the itching maybe because seasonally the symptoms have subsided for a time?

I know personally it took me 6 years to return to my dermatologist who diagnosed me with this condition because instead of BRP I was concentrating on the water on the spinal cord diagnosis, thinking that’s where I could “cure” the symptoms. It’s been a long road.

One that hopefully might end soon. There is a report I’ve posted before, about a CURE (I do not use that word lightly) that a doctor helped find with a few patients with BRP using Thalidomide:

(Thalidomid) Case studies with BRP: http://www.anaisdedermatologia.org.br/artigo_en.php?artigo_id=44

How it works: “Thalidomide inhibits acute UVB erythema at 24 h after exposure, as a 100-mg daily dose of this drug for 4 weeks conveyed a sun protection factor of 1.56 to > 4.0. We conclude that inhibition of UVB-induced inflammation may, in part, explain the therapeutic benefits of this agent on photosensitive diseases.” (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15327555&dopt=Abstract)

Everything BEFORE this drug offer was an offer to “manage” symptoms and addressed either direct on the skin creams to “trick” the nerve endings or internal nerve medication supposed to dull the nerve endings (and our brains!!) in the process. None of these were ever said to help repair nerve damage. Could Thalidomide?

Obviously, it’s not going to cure our necks of all pain. What would? Maybe surgery? In Mark’s case, he doesn’t HAVE a neck issue. His is based on something else altogether. BUT WE DO ALL HAVE THE PHOTOSENSITIVITY! I was in the sun my whole life. And suddenly, seemingly out of nowhere, at age 22, the sun was my enemy.

So keeping both factors into account, my understanding is that it must somehow help repair the nerves. I mean, if it can offer help for Leprosy patients, and that involves all sort of nerves and skin, why not?

I took this to my dermatologist, begging him, after everything I’ve tried to help me and please prescribe this drug. Then we found out it’s $4,000.00 a month. YES, those numbers are correct. But I didn’t give up. I asked help from my doctor to try to get me on Thalidomid’s patient assistance using my (now near negative since I’ve lost a job because the boss wouldn’t let me off to go back to the doc) income, the fact that I don’t have insurance, and his recommendation to the program to receive the drug for free. (This drug is also used for cancer patients, leprosy patients, and HIV patients, and many of them do not have the funds to receive it (who does?!?) but are in dire need. So for those circumstances where a patient might find immediate or long lasting relief, this company considers the patient for a free 6 months supply).

I thought I was dead in the water, though. Compared to those diseases, I thought there was no way I would be approved, even though this is a life altering disease that has been rampant for 7 years in me and has caused me to lose more than one job and feel like I was going crazy. It has literally affected every facet of my life negatively for seven years.

WELL…I got my approval in the mail yesterday! According to the doctor I have quoted about (please check out the website I listed for more info!) who discovered this “cure”, the patients were only on the drug for 2 months. And since then, they have BOTH been ASYMPTOMATIC! NO SYMPTOMS and they are NOT ON THE DRUG ANYMORE! I can do anything for 2 months if it means A CURE!

I promise to very diligently keep you all in the loop as far as when I receive the drug, the side effects, and if it is a cure, WE NEED TO MAKE THIS A MUCH BIGGER ISSUE THAN IT’S BEEN MADE. So far, all doctors have given us are things to “manage” the symptoms. What if there is a cure for this disease and we just never knew about it? I’m thinking positive for all of us, and hoping this is the case. If it is, think about how many people this could help!

Dear sb,

I’m very grateful for your thorough report. And it emphasizes that it really does vary from person to person how much we are affected by BRP. Actually, I can’t get Capsaicin here in Denmark so I had to order it online (probably illegal but…). I don’t think I would have ordered that many tubes if I’d read your entry first.  But ok, now it’s arriving and I’ll try it without being too disappointed if it doesn’t work for me.

In any case, like I said, I knew that rubbing on Capsaicin would be treating the symptoms only. In the meantime I have been doing my 5 Tibetans exercises plus other neck- exercises every day, and I’ve been a lot better, but not symptom free. But for me for now it’s okay.

But if I was as affected as sb and some other people are, I would probably also start looking into the heavy drug department.

It’s just that the word Thalidomide is a no-no for us Europeans after the tragedy of the thousands of children born with birth defects. Maybe this is common knowledge for all Americans, (in that case sorry for rubbing it in), I just thought it would be appropriate to tell the younger people on this site, that this is (still) not a drug to fool around with, (around 15,000 children were affected by thalidomide, of whom about 12,000 in 46 countries were born with birth defects, with only 8,000 of them surviving past the first year of life) and that this is why doctors save it for the really serious cases.

I think sb’s case sounds serious, so I’m happy for you, sb. I’m looking forward to hearing how it works for you and I wish you good luck!!!!! If this really does turn out to be the CURE it really is a big issue!

For the not so affected, since Doris didn’t write back about what effect Capsaicin has had for her, I promise to try it when it arrives in my mail box and I’ll keep you posted.

Mari Anne, Copenhagen
(P.S.: And for those who want un update on Thadomide read here: http://www.chm.bris.ac.uk/motm/thalidomide/start.html)

So far, now that I’ve been approved, I have an appointment next week with my doctor to get a pregnancy test, and to enroll on the STEPS program associated with this drug (Thalidomide).

http://www.thalomid.com/steps_program.aspx

The reason for these precautions, as some of you might already know, is due to the horrible birth defects caused my Thalidomide prescibed to expectant moms who simply had morning sickness.

I don’t plan on becoming pregnant any time soon, so this is not an issue for me, just another hoop I will gladly jump through.

Oh — one more thing — had a horrible itching episode this weekend when my hubs and I traveled only 3 1/2 hours to louisville. Don’t know why. Could have been the travel time in the car (improper neck position, etc.) Anyway, some of our friends were there and once they saw my bloody arm and my begging waitresses to bring baggies and ice (they had no baggies), someone brought out an epi-pen kit (epinephrine) and insisted it would help. I knew this wasn’t an allergic reaction I was having but hey, I have been willing to try anything for BRP, especially when there isn’t an ice pack in sight. So I injected the epipen into my stomach and took the 4 antihistimes included in the kit. Hours later, a little relief, but no real change except that I was nervous and tired at the same time. Verdict: Obviously, just like Benedryl and prescription Hydroxizine, this works very little if any to relieve itching (as we all know). Very nice of them to offer, though…

More as it happens 🙂

Oh yes, Thalidomide is most certainly a LAST RESORT for sure. I have to be on 2 forms of birth control and take monthly pregnancy tests just to get the drug, and i will gladly.

It is a very serious decision, but i do feel IF it is indeed a cure of sorts, my god, how great for even a small percentage whose lives are fairly miserable at times (or years) by this.

I’m certainly not going to take any chances about pregnancy, and I also have to accept that some of the side effects for the 2 months that I should be on it won’t be a picnic. Some of them are quite serious, some no worse than my drunken, slobbering, useless idiot feeling i got from all the nerve medications they’ve tried on me…So it’s a big deal. The only part I am looking forward to is, if indeed it works as it did in the other trial, being ASYMPTOMATIC AFTER ONLY A FEW DAYS! And then being ASYMPTOMATIC even when I cease the meds! 🙂 🙂

i do appreciate a doctor weighing in. i just think that the photosensitivity that other doctors have noticed (i am also a blue eyed redhead who loves the outdoors, by the way) plays a role, too. not just the cervical. i could be wrong, but i believe if i were, at least one of the many drugs and therapies i’ve used to treat the neurological part of the disease would have, at the very least, given me some sort of relief or affected it somehow. AND, the key factor in this disease blows the cervical only theory away: seasonal symptoms for most of us.

I have been waiting to post this to make sure I felt it was really working for me. Now, that being said, could it be because the season for the itch is waning? Maybe, but it’s cheap and worth a try. I’ve been using the green aloe gel found in drugstores with the pump top. I put it on in the am and pm and I do feel that is has helped. I had been having a problem every evening, and haven’t itched for several days at all now. As I said, it’s cheap and worth a try.

To Molly in TN,

I’ve had a prescription for Zonalon and it was well worth the money.($50 copay for me) I was only prescribed for 8 days use though. What do you do then? I am on my eighth day and I am not looking forward to not being able to use Zonalon tonight. My arms stopped the down deep nerve grating itch and I was like you and was able to scratch the surface without turning into a two hour episode. I’ve had the most peaceful eight days I’ve had in years. I know you must have passed your eight day limit to using the Zonalon as you are the reason I requested a prescription from my dotor. What are you doing now?
J in Arkansas

J in Arkansas,

I read that in the literature, but my M.D. did not put any restrictions on it, that I can tell. I have been using it twice a day (not the 4 times daily he recommended), but have had to increase it to 3/day on the left arm where it’s the worst. You’re right, sometimes I go a full day and hardly even think about it now! I received a tube of 45 grams (not even half way through it yet) with two refills available.

He also gave me another Rx for an ORAL dose of doxepin (Zonalon is the topical version), in case the topical wasn’t adequate, but I haven’t felt the need to fill it yet. I’d prefer not to since oral meds almost always have side effects.

Molly

hi mark — glad to hear it’s getting better (a little ) 🙂 YES, to answer your question, for me humidity is the enemy!!!

Wait — Kate itches in COLD climate weather? That would be weird.