PMR and RA treatment question
Posted , 9 users are following.
I have PMR since November 2015 and was slowly reducing and got to 3mg, when I started having problems with knuckle joints, pain, weakness and swelling. About 3 weeks ago I saw Rheumi and he suggested not to reduce pred any more and also gave me some ointment for inflammation/pain. It helped a little, but did not really improve the swelling /pain much. I requested another appointment and saw him again a week ago. He thinks it is most likely RA, and that swelling is because of synovitis. He increased the dose of pred from 3mg to 8mg and I will see him again in 3 weeks .
Inflammation and pain was gone pretty much after 2 days. I have actually increased the dose to 9mg (6mg after midnight and 3mg in the morning) for 6 days now. All the symptoms of RA are gone..
Now question: I would like to go back to lower dose (4-6) ASAP before my adrenals shot down again, but don't know what sort of treatment RA requires as far as dose and time. Is this going to be weeks, months or longer? Does RA stays under control on lower dose of pred?
Just for a reference, if I recall correctly, i did not have any hand problem above 4mg, and I noticed them first when I reduced from 3.5 to 3mg
0 likes, 22 replies
Anhaga nick67069
Posted
This sounds like a slow taper akin to that used for PMR is appropriate. If I were in your shoes, and without other advice from the specialist, I'd do a slow taper assuming RA has now replaced PMR as the primary generator of symptoms.
https://www.ncbi.nlm.nih.gov/pubmed/12386945
Anhaga
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EileenH nick67069
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Have you ever tried taking your split dose the other way round? 3mg at night and 6mg in the morning would almost certainly not dampen adrenal function.
It is relatively unusual to use just low dose pred for management of RA - although there are articles in the medical literature that support it on the grounds the side effects of low dose pred are likely to be less than those of other drugs. Methotrexate is the worldwide first line approach for RA - but it usually takes months for its effects to kick in so pred is often used in the meantime.
Did the rheumy not comment on what he was thinking? I suppose there is no real reason why you can't go back down a bit and see what happens - if 5mg pred did the job I'd take that and run if it were me!
amkoffee nick67069
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nick67069
Posted
Note: I must say that medical care here in Japan is accessible, high quality and what is the most important - very affordable.
Michdonn nick67069
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Nick, I would find the dosage that gave me pain free, life is short I don't live it in pain. 5 mg or more what ever in necessary to get the inflammation under control. My 2 cents worth!??
nick67069 Michdonn
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Michdonn nick67069
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Nick, I would try 10% or less using DSNS method. Once I got to 10 mg I been reducing by 1/2 mg on DSNS. My Rheumy think too conservative, but that's okay, I am reducing and feel good. My plan is to reduce by 1/4 mg when I get to 5 mg. But after having a terrible flare I am in no rush. Once again good luck, think positive and plan. ??
Anhaga nick67069
Posted
Nick, I just looked back at my calendar for last year while I was dealing with a relatively minor flare. I felt you should know this is what happened. I had just got to 1.5 when I had my regular medical appointment. On hearing how low I was my doctor didn't refill my prescription but cheerfully suggested I use up my tablets, stop and see what happened. As I happened to have almost exactly the right number of tablets left to do DSNS to zero with no waiting at each level I thought I'd give it a shot. i felt quite well at the time and wondered if maybe I was in remission. My calendar tells a different story. I tried a couple of times to get to 1 mg, over a couple of months. Then I was up to 2. I saw a locum, because I did need the prescription renewed. She thought I should go back to 5 for a while, but I couldn't bring myself to do that. So I mucked around with 3 and so on, never really getting better. Finally i thought, okay, I was reliably good at 2, let's add 5 mg to that. So I went to 7. Felt much better! Stayed there four days, then four days at six, and so on until four, when I appear to have started the short version of DSNS and back to the .5 mg drops. This was in November, so I'd been on that wayward track for several months. By Christmas I was well on my way to 3.5, and have continued to go very very slowly since then. I am currently stepping cautiously back into 1.5 territory again, more than a year since this misadventure occurred. Last visit, early April, with GP my CRP was normal for the very first time and she told me I didn't need to go back for a year. But in October she had given me a prescription, renewable four times, for 300 x 1 mg tablets, so I can do what I like with my dosage. In fact the prescription will probably expire before I've filled it the fourth time!
But the lesson learned was I should not have tried to rush the last few mg to zero. Nor, when I realized it wasn't going to be a piece of cake, should I have persisted. In the end I'd have taken less pred if I'd just settled for 2 back last August after the first intimations of a flare.
nick67069 Anhaga
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nick67069
Posted
During last month, I did experiment with some of the supplements that people talk about to help reduce inflammation.
I have tried Turmeric in powder form about 1gr/day split in 2 doses and with black pepper. It seems to be helping and it seems to be equivalent to about 1mg of pred ( or less). I must say I hate the taste. Next I will try to use ginger, much better taste and is readily available here in Japan. Interesting trivia tidbit.. Turmeric root belongs to ginger family.
EileenH nick67069
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nick67069 EileenH
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You may be correct, but in my mind I treat them as separate phenomena. I was on 3mg for PMR, when I developed problem with knuckle joints. At that point I increased the dose to 9mg and after a week I reduced to 6mg, split in two; 3mg at midnight (for PMR) and 3mg at noon ( for hand problem)... At the moment I alternate 3mg/2mg at noon time just to see how symptoms change. The idea is that if I don't have any issue, then in time I would be down to 3mg dose total . That's the logic. Rheumi is not saying that I have to reduce... He suggested that if I am reducing, then I should take away from noon dose.
dan38655 nick67069
Posted
Hi Nick, I posted a couple of times today after a year off here, and your symptoms and dosage requirement seem a lot like mine (I'm at 5.5 years since DX).
As I mentioned in my other posts, my dosage is centered around 3mg now, but varies seasonally every year.
I finally caught on and after months at 2mg I have learned to increase dosage as needed each spring back up to 3 or 4mg for several months. My thumb and knuckles are the first sign first thing in the morning telling me how my dosage should be adjusted!
I am doing construction work so my energy level and shoulder joints need to be working at a certain good level, but still it is the joints in my hand that best tell me how well that my dosage is being adjusted each morning.
I'm still riding my bike to work, so am warmed up for work upon my arrival, which helps.
I started doing this line of work as much for my continued recovery as for income, since my upper body had become weak and I really prefer to get moving early each day.
You might even want to plot your dosage requirement for a year to see if you recognize any definite seasonal pattern as I did.
nick67069 dan38655
Posted
Hi Dan, I am glad to hear from you, albeit I thought that you were over PMR and forgot about us
. I am not sure about seasonality. In retrospect, I think I caused my issue with hands/palms. Late spring I got a new bike with newer, more aggressive geometry. I noticed that distribution of weight shifted to the front and this, I believe is the reason for stress on my hand. I have since changed the height, angle and location of the seat that changed my position and load on front end. Old bike also had end bars that allowed multiple grip, new one does not have (yet)... What confused me is the timing... After riding a bike for 4-5 weeks, I went for 3 week trip to Europe and that is when I had synovitis "attack", which mislead me to believe that it had nothing to do with bike. Live and learn...