Ok guys... Heres my Calvin situation: He has been on methotrexate (plus other meds ie plaquanil etc) for approx 20 months. Prescribed by head of rheumatology at Mayo. He was being fitted for a wheel chair at the time so the doc said we could try it. Aside from the side effects, it worked well, then a few months ago we started having small flares again. We called etc but the docs seemed not to be worried, they said to stay I n it. He looks and acts fine to most, he just finished 1st grade with As, is making home runs in little league, and swims like a fish! BUT at night & in mornings he often limps, and in his sleep he moans & says his legs/feet are so cold even with sweat pouring. Also the flares are getting worse & coming more often. Its still mostly one leg and one wrist but weve also added his groin area and neck to the list of painful areas. Thinking that the dose needed increased (after 20 months!), I pgot back with the Mayo again. This time I was told that they were going to let his local doc take over with meds etc. Unfortunately they didnt clear it with her first. So, when Cal needed a refill there was chaos and I noticed that TWO docs (local & at Mayo) said they were not comfortable prescribing methotrexate... The doc that had been doing it has left the Mayo (?). So, I was told we needed a new rheumatologist ASAP and that we could go back to Mayo to establish or find one closer to home. They even recommended one in KC. When I asked questions about the meds, (FB friends in other countries said its bad stuff & even said folks have died from it) I was told that it is a biologic drug and they havent been around long...no body knows...starting to find out...really bad side effects...etc. I googled side effects (again) & saw nothing terribly alarming. Then, based on info from FB friends I googled mortality rate - ! Its bad. I spent hours and saw everything from 12% to 17-22% mortality rates from the med!! OK GET HIM WEINED OFF OF IT NOW! Nope. Nobody is comfortable with that either...! We must FIRST establish with a new doc. The doc theyve recommended in KC isnt taking new patients but could try to work him in. The soonest? Possibly as soon as 2-3 months! Or, we can see a first year doc that just started in their office...? FINE! So, we have this appt 6/11 in KC. However, there are a couple of things to consider, if we go off the med, hes back to unbearable pain. He not only cant walk but even with morphine, oxycodone, etc on board, he cries and whimpers in pain. PLUS, if were off the med we risk that the illness worsens and travels (via connective tissue) to his brain or heart causing a potentially fatal situation. If we stay on the med, we have A potentially fatal situation from the med itself, PLUS its no longer as effective... And we have a rookie doc to advise us... And we dont even know what exactly he has!! NOW WHAT? Any suggestions? Im interested in looking at a diagnostic center or doctor...? Im checking into Shriners in St.Louis and John Hopkins in FL. We have spent every last dime on all of this and still have a very sick child with no answers. Rod is working 12 hours a day, 7 days per week and I am hocking stuff in the drive way and on eBay etc. Even with all that were still barely able to keep the utilities on. Need advise and PRAYERS please?!
Posted on: Sun, 01 Jun 2014 19:39:32 +0000
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