Allergic Reaction to Sinemet?

[robertff3401]

I posted previously that after being on Pramipexole for over 30 years, I, at the direction of my PCP, completed about 2 weeks ago a transition over an 8 week period from P to Sinemet (100 carbidopa-200 levodopa). The transition went smoothly and I am now on two tablets, one taken at 3 pm and a second at 6 pm. I have virtually no symptoms of RLS. I also began taking an iron/vitamin C tablet every other day after having my ferritin level checked. My reading was 66.

I learned form information on this website that what my PCP had suggested was NOT the best approach. Sinemet is also a dopamine agonist and actually has a higher rate of augmentation than pramipexole. But here is am.

My newest problem is that about half way through the transition, I began developing a few red small red bumps on my legs, arms, back and chest. There were so few at first that I really didn't pay much attention to them. However, by the time I had completed the transition, I had a large number of them scattered over my body from the shoulders down. The only change I've made in my life over this period of time is the subtraction of pramipexole and addition of Sinemet. I have not contacted my PCP yet. I wanted to get some input from Sue and others before contacting him. I do think that I'm going to have to get off Sinemet because of my allergic reaction to it.

I also called the office of Dr. William Ondo at Methodist Hospital in Houston (just a few hours drive from me) and found that I can make an initial in-person appointment (first available is June) and after that can schedule virtual appointments. He is one of the leading experts in treatment of RLS and I think I may need his help at this point.

I would appreciate comments for any and all!

[SueJohnson]

It certainly does sound like you are having an allergic reaction. Call your doctor and ask for a proscription for clarinex if he wants to prescribe something else make sure it is a non-sedating antihistamine as the older sedating ones can make RLS worse. You can check yourself by googling it. In the meantime you can take OTC claritin or zyrtec or Allegra. If this does not solve your problem you will need to come off it . I am a little confused by the amount you say you are taking as the largest dose is 25-250 (others are 10-100 and 25-100). Regardless, ask for whatever size which you could use to reduce by 10-100 every 2 weeks. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. It's great that you have an appointment with Dr. Ondo although that is a long time to wait. Although I hate to suggest it, if your doctor won't prescribe opioids for this period and you are really suffering, you might have to temporarily go back on another dopamine agonist like ropinirole. Dr. Ondo will prescribe opioids. Also ask for an iron infusion as that will more quickly raise your ferritin.

[robertff3401 in reply to SueJohnson]

Sue, I was wrong about the strength of the Sinemet. It is 25-100. So I'm taking two tablets of 25-100 daily. I wrote that about 4 am this morning and obviously wasn't thinking clearly. Thanks for your advice. I'll see if one of the OTC antihistamines you suggested with clear up the rash. I think my next goal is getting off Sinemet. That's where Dr. Ondo may be valuable.