Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I had my 6th month visit yesterday. I reported that I felt 75% better than what I did on my first visit 8 months ago. He was glad to hear that.
I did ask about my "heat" problem, getting sick every 6-8 wks, nerves/tingling/numbness, "drunk" spell from too much sound (balance gets off), ringing in ears - he said he did not feel they are related to my RA problems. So I said fine and I would address those after I feel this is well controlled.
Dr. Rhuemy said he would like to try to get me to 100%. Said sometimes that last 25% is really hard to get. He is having me up the plaquenil to 600 mg/day then in a few months start reducing the prednisone. He doesn't mind me taking the prednisone but if I can reduce and stop it, that would be great. But if I need it, it's not a problem.
He does consider me borderline/mild. I don't have swelling or redness. He's hoping with this treatment I won't progress...hoping we got to it early.
I'm a little scared to get off the prednisone. I'm thinking that's what is keeping the inflammation and fatigue under control. FATIGUE was my #1 complaint with joint pain #2.
At some point, I will address those few other issues with a neurologist...just to make sure nothing else is going on. I don't want to go another "7" years ignoring problems just because I don't like going to doctors. That was so silly - but hindsight is 20/20!
I did ask about my "heat" problem, getting sick every 6-8 wks, nerves/tingling/numbness, "drunk" spell from too much sound (balance gets off), ringing in ears - he said he did not feel they are related to my RA problems. So I said fine and I would address those after I feel this is well controlled.
Dr. Rhuemy said he would like to try to get me to 100%. Said sometimes that last 25% is really hard to get. He is having me up the plaquenil to 600 mg/day then in a few months start reducing the prednisone. He doesn't mind me taking the prednisone but if I can reduce and stop it, that would be great. But if I need it, it's not a problem.
He does consider me borderline/mild. I don't have swelling or redness. He's hoping with this treatment I won't progress...hoping we got to it early.
I'm a little scared to get off the prednisone. I'm thinking that's what is keeping the inflammation and fatigue under control. FATIGUE was my #1 complaint with joint pain #2.
At some point, I will address those few other issues with a neurologist...just to make sure nothing else is going on. I don't want to go another "7" years ignoring problems just because I don't like going to doctors. That was so silly - but hindsight is 20/20!
I do not like prednisone, so try not to take it at all anymore.... been off it for the last year. I don't like me while on prednisone, but I know everyone is different when it comes to RA and how the meds work for you.
Hopefully when you start that weaning off you will feel just as good.... if not maybe looking into a different med would be the answer!
Good luck!
Cindy
I am concerned that prednisone is controlling your disease, not the Plaquenil. Please get off the prednisone as soon as possible. Some side effects include weight gain, hair loss, thinning of the skin, depletion of calcium to the bones and osteoporosis, bone necrosis, mood swings, and water retention or edema, adrenal failure, to name only a few! It is a sneaky drug, because it makes you feel better, but the side effects are horrid.
Please try and cut back on the prednisone, usually 1mg every two weeks. If it hurts too much, then Plaquenil is not working. And my suggestion is to see a different rheumy who will be more aggressive in your treatment.
I'm glad you feel better, but it is better to hit the disease hard at first, then cut back to have a long term milder disease.
I started pred first. That helped to get the inflammation and fatigue under control. Then about 6 wks later I started plaquenil. That's when I could tell my joints/bones were feeling better.
I can't wait to wean off pred....it is the "devil" drug! But it has helped when I needed it.
I really feel the plaquenil is working for me at this time. I guess time will tell tho. I have high hopes. I'm hoping the added plaquenil will take away that last bit of pain in my right leg so I can start exercising again...would love to build up to run/walk a turkey trot with my daughter at Thanksgiving this year.....that's number 1 on my bucket list!
I'm sure you have been made aware of possible complications with the retina when taking Plaquenil. Those are not supposed to be too common though, and any effects can be monitored through regular visits to an Ophthalmologist.
I do hope you are well enough for some additional exercise soon, but don't get lulled into thinking you can exercise like a "normal" person, no matter how good you feel. That happened to me last July/August, and I am still fighting my way back from a serious flare brought on by the exertion in a water aerobics class. (I had been in remission for a good year until I did that.)
In any event, I do hope the turkey trot with your daughter is everything you hope for at Thanksgiving this year. Let's hope we all feel much better by then. ;)
I started feeling my usual 6-8 wk sicknes coming on this week. So I uoped my pred from 5mg to 10mg/day. OMG I look like a blow fish! It did keep the sickness at bay but now I've got 4 extra lbs to deal with.
I wonder if insurance companies let doctors start RA'ers like me...borderline/mild....off with aggressive treatment or is there an order/protocol to the meds they prescribe? I would think there is protocol to follow for ins to pay. I see from others posting here how expensuve this disease can be!
This time 2 years ago I started c25k and was doing well. I was pushing hard...the pain in my right leg got so bad I could barely walk. I think that was a flare...lasted until I decided to see a rheumy last August. Never dreamed it was RA.
Does anyone ever get pain free? I have a very high pain tolerance so when my pain is really bad, I can't imagine what it's like for a normal person.
We have bad storms heading our way here in NE Texas on Sunday. My bones will probably suffer because of it.
Hope y'all have a good, safe weekend!