Hello fellow gouties!
I’m pleased to say that after the “big attack (and only one)” and starting Allopurinol over 3 years ago,?I’ve been attack free and living a pretty normal lifestyle (SUA readings consitently betwenn 4.0-5.0). Anyway, I posted a thread about this awile back and wanted to give an update, but moreso get your opinions.
I’ve been encountering this rash approx. 1X per year for about the last 2 years and it’s now frustrating me because my Dr, allergist and even Pharmicist are stumped. The rash is maculopapular and consists of tiny pinhead-like red dots (sometimes a little itchy). Left untreated, it spreads all? over my body in 24-48hrs. It’s not patchy or blistered and I have NO OTHER SYMPTOMS (if I can figure out how to post a pic to this thread, I will do so in the future).
So a little background…Oct 2010 (13 months after initially starting AP) I developed?the rash for the first time. It started out as a scratch-like mark on my back and around my waist. It then spread to my?biceps and within 24-48 hrs was all over my body. A Rx of Prednisone cleared it up and it did not come back until Aug 2011. Again, A Rx of Prednisone cleared it up and it went away until Nov.2012 (I’m currently taking Prednisone again). I have noticed a small similar version appearing a couple times throughout the year, but when I’ve caught it quickly and put Hydrocortisone on it, it went away (not even sure if it was the same rash though).
My allergy tests?have come?back negative for everything they tested me for. My Dr., allergist and pharmist all keep telling me that they do NOT think it is from AP since it goes away for long periods of time. The last thing I heard was that they think it’s some kind of contact dermatitis. The thing is, I’ve never been prone to rashes before this and never even had a rash like this nasty one?before.
I’ve switched to all fragrance free detergents, soaps, dryer sheets, shampoos, etc. It does seem odd that each time it’s occured has been in the fall season (maybe just coincidence though). The only options I can think of at this point are:
1.) Find new Dr’s for second opinions, 2.) stop taking AP next time it happens (perhaps switch to Uloric for a short period) to see if the rash goes away, 3.) Take my Dr’s advice and continue to “treat it when it happens” and continue taking AP.
So, as you can see, I’m very frustrated.? I don’t mind “treating it when it happens,” but I’d like to figure out what’s causing it (and if it’s AP, am I hurting my body by just “treating it when it happens?”). I should also?mention that I have my standard blood work done every 6 months and everything?has been?good.
So friends, what are your thoughts? AP has been my lifesaver and I’d really hate to stop taking it. I’m just out of ideas. Thanks in advance.
First, I should add a general point about allopurinol side effects. Actually, this applies to all gout treatments. Doctors are used to dealing with side effects, or adverse reactions, and they usually try to balance the benefits of treatment against the drawbacks of side effects. In this case, the life-saving benefits of safe uric acid is often far better that any side effects of allopurinol. Most of these can be managed. For more information, please see my allopurinol side effects guidelines.
My understanding of allopurinol-related rash is that it either happens or it does not. So, I agree with your medical team. It is highly unlikely to be allopurinol related.
I’ve searched extensively for intermittent rash relating to allopurinol, and I can find nothing about it. One thing I did learn that might be relevant:
1 study reported time from starting allopurinol to onset of rash. This ranged from 4 days to 54 days. If the same thing happens with other causes of rash then you may need to look beyond the obvious.
Personally, I’d investigate everything I did for 2 months prior to the rash. I would suspect things that had previously been OK, as our responses to substances change through time. Also, manufacturers change ingredients, so contact with something previously OK could now provoke a reaction. From what little I have read, the answer is often something unusual that you would not normally suspect. The fact that this has only happened in the fall speaks volumes to me.
If that revealed nothing, I’d try febuxostat (Uloric) for a couple of years, but I’d still keep looking for other reasons.
Is there anything that you did, or had contact with in Sept/Oct 2010, July/Aug 2011, and Sept/Nov 2012 that does not happen the rest of the year (I’ve gone back to Sept this year, as we are early in November – this might also apply to other years)?
Is there anything you’ve added back to your diet that you dare not eat when uric acid was dangerous?
I appreciate the feedback Keith. I think you might be right about looking back a couple months from the time the rash started. Up until now, I’ve only been looking at what I’ve done a few days prior to the rash just because by the time I notice it, it only takes hours before its wide-spread (so I’m asuming I had very recent contact with something). Are you saying that it could be developing quite awhile back before I ever noticed it? What’s difficult is that my diet hasn’t changed in the past couple months and my lifestyle is pretty consistent. The only things I can think of at this point (as they relate to my latest outbreak) are, at the end of September I had a sinus infection, about a week or two before this rash I ate about 2 lbs almonds in a few days (I haven’t done that in a while), and I just started wearing winter clothing that’s been stored away for awhile (although that wouldn’t explain my rash in Aug 2011). I also ate a good-sized brick of velveeta cheese the night before, which I don’t normally eat. Unfortunately, I can’t link any of those things to past rashs because I just can’t remember.
It sounds like this is not AP related, but I’m sure you can understand why I’m questioning it, especially since I’ve never had rashes before that I can remember. I’ve done some Google searches as well on “small red dot rashes on the waist and torso” and found some people claiming to have them too (although most people didn’t have pics posted so it’s hard to tell if their rash was the same as mine). I’ve seen posts saying it could be anything from a viral infection, to petechiae, to weather changes, Pityriasis Rosea, etc, etc.
I guess that as long as this rash isn’t hurting my body (even when its not noticable), then I should be happy and continue taking AP! Still very puzzling though. I would hate to see what this rash looked like if I left it untreated for a week!
Have you considered shingles. My wife’s experience was a rash at waist level ?
Hey Frank. Honestly, I’ve considered everything. I don’t think it’s shingles though. From the pics I’ve seen of shingles, my rash looked different. Also, mine did not blister or burn…aside from a little bit of itching, was pretty much symptom free.