Posted , 16 users are following.
Come on people - give me an update on what's happening in your world!
I'm doing really well - down to 4.5mg daily and 20mg MTX weekly (plus folic acid 3 x 15mg x 3 days).
I have no pain to complain of, and I'm bright, alert and happy back working full time.
My only issue is losing all the weight I've put on in the past 12 months!
1 like, 37 replies
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jeanne333 FlipDover_Aust
Posted
I'm still having issues, 5 weeks now, from severe reactions to Hydroxychloroquine
COMMON BRAND NAME(S): Plaquenil, that my RA prescribed for me. (Wanted to get me below 20mg prednizone). My ankles still look like cows hooves, and left knee is swollen and painful, most of the excessive bleeding has slowed down and is almost gone, the pain and weakness is a lot better. I'm still using a cane and walker for stability, whenever I'm not in my home, and sometimes even then.
Needless to say, I'm still at 20mg prednizone, should probably be higher, but I'm trying to stabilize at 20mg. I will start the slow process of tapering, 6 weeks to 2 months between 1mg drop, hope it works this time. Wish me luck, in 4 days I will go down to 19mg, the last 3 times I tried, my lungs (I have COPD, heart muscle damage with 2 leaky valves, stage 4 kidney failure, damaged thyroid and parathyroids) filled up with fluid, the PMR effects my breathing , I'm also now on oxegen. The first time I got to 17 the next time 18 the last time 19, so I'm really leering of trying, but try I will. One more time!!!
BUT, I WON'T TRY ANOTHER MEDICINE OTHER THAN STEROIDS, EVER AGAIN, I'LL STAY ON STEROIDS TILL I DIE.
jo42444 FlipDover_Aust
Posted
QUESTION I will probably be asked to take mxt at my next rheumy appointment. I have been putting it off not just beacause I fear the side effects but because its taken so long to withdraw from pred. Does any one know about getting off mxt. Do you get any withdrawl symtoms like you do from the steroids. Joanne
FlipDover_Aust jo42444
Posted
I have no idea, but there is a separate forum discussing MTX - you could take a look there.
https://patient.info/forums/discuss/browse/methotrexate-2930
Susanne_M_UK jo42444
Posted
I have just come off MTX after being on 15mg for 6 months. I just stopped on Saturday, so in effect a full week without MTX by then, on the advice of my rheumy of course. On Sunday, the worst side effects were gone. Today, Tuesday, I still have some of them, but really nothing compared to how I was feeling on MTX. I'm sure the tiredness I have now is due mostly to my GCA.
mphooey FlipDover_Aust
Posted
In a nutshell... I changed rheums. Stopping humira and mtx. Now back on pred, 15 mg, will taper 1/2 mg every 2 weeks. Pain only went away when resumed pred.
Former rheum treated to the lab and insisted I had RA. This one doesn't. Got my vote so far.
Also this one thinks my persistent knee fluid is due to OA. That's what happened this month.
jeanne333 mphooey
Posted
Im with you, staying on steroids, if it takes 20mg to stabiluze me, thats, where I'll be. I'll never try another medicine for RA, after the server reactions I had recently. Beside, if you read the side effects, they are as bad as steroids, all that for a medicine that does nothing.
FlipDover_Aust mphooey
Posted
Oregonjohn-UK FlipDover_Aust
Posted
Juno-Irl-Dub FlipDover_Aust
Posted
Now aren' you sorrry you asked? !!!! Wellcome back. Great to hear you're doing so well. . J x
margaret22251 FlipDover_Aust
Posted
well done FlipDover,
I am almost down to 5.5, and still have the weight i put on.
Best wishes and hope it continues for you.
Regards Mags.
Susanne_M_UK FlipDover_Aust
Posted
Welcome back Flip. Great to hear you're doing so well. Hope you had a great vacation.
Won't bother to go into my sorry state of affairs. Still waiting to hear from rheumy about a message I left her asking if I can reduce the MTX. She's been away 3 weeks.
FlipDover_Aust Susanne_M_UK
Posted
Susanne_M_UK FlipDover_Aust
Posted
The MTX side effects started to kick in about 6 weeks ago. I now have only about 2.5 days of the week when I can manage to shuffle around, go out for an hour or so. The other days, I'm so affected by the MTX that it feels as if my body is giving up. I either rest or sleep during the day. I don't cook, paint, do any chores, as I just collapse after 5 minutes. It's been a gradual thing, but definitely a pattern of when I take the MTX.
Ages ago, I requested a B12 and folate bloodtest. They came back clear and rheumy wouldn't give me B12 injections, even though I had all the symptoms. As B12 tests measure all B12 in the body, including unusable B12, I finally decided about 10 days ago to take a very good B12 tablet. It has given me about 15% more Energy!
I'm on 15mg MTX and 25mg folic acid.
FlipDover_Aust Susanne_M_UK
Posted
Wow, I really am very lucky then. I'm on 20mg of MTX and doing ok.
Is it time you told your rhuemy you're done with the MTX and just deal with taking more pred?
Susanne_M_UK FlipDover_Aust
Posted
I will tell her. She's been away for over 3 weeks. I've left a message for her, but not heard back, but have appointment on 5 July.