Rhuemy says my blood markers are normal and should dismiss me but is trying something new. Antimalaria drug?

I am in the US and referred myself to a rhuemy as I felt my steroid dose could be better managed by him than my gp. My gp diagnosed me with classic hip and thigh symptoms of stiffness and pain that was a level 4 to 6 and just wouldn't go away. My sed rate at that time was 30 and I don't remember the other. He said I was classic and I started on 20 mgs, I think and got relief after a few days.

After going to the rhuemy after a year on steroids he says science is the king and blood tests must show correlation to inflammation activity. He did get me rapidly from 18 to 12.5 but I can't get below that and haven't been for 6 months. I have been tested for every other possible illness including bone tests for cancer. I think I just have PMR. I fit exactly what I read here daily. I had a shoulder issue which has been sorted out to being spinal arthritis and I recently had a cortisone shot in my c7 vertebra which can't hurt me any.

Last week I was having very bad pain so I went out for a blood test so I could prove to him and myself that something was going on. Sed rate was 11 up from 9 which was my last one. He told me today that is normal and 30 is on the high end of normal and most Rheumatologists would dismiss me from care based on that. So where do I go I asked? Well you have some kind of pain syndrome he says so he is going to try me on some anti malaria drug to see if it will work as a steroid sparer. He is horrified at the amount of preds I am taking ( and I don't tell him if I increase either) He says it will take 6 weeks to build and then start cutting my dose 1/2 mg per week and see how I do.

Whatever I have has completely taken control of my whole life and now I wonder what I have.

Thanks for the help and the rant. Bunnymom

20 Replies

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  • Half a mg per week is probably too fast for you. Are you OK at 12.5mg? If so you can always try the half mg reduction using the very slow nearly stop system talked about on this forum. Doctors seem very keen on getting us below 10mg as quickly as possible.

  • I have tried multiple times but end up going back.

  • Have you tried the very slow system? New dose one day then back to old dose for a few days?

  • Yes

  • You never know one day you may feel really well and it will work. What are your CRP and ESR like?

  • Sed rate was 11. Had been 9. Was 30 when first diagnosed. I didn't get the other value as I was too shocked after he told me that he should drop me as a patient! He said all the values of sed rates I had had were in the normal range. He believes I have some kind of pain just not sure what. It seems classic pmr to me. I am not eager to take more pred than necessary but I am not doing without and having pain. I will try the new meds and see if it can bring my dose down. My GP is very supportive so I can always go back to him. He will let me manage my own meds. I went to the specialist hoping to get more experience and in depth help. Well we see how that worked. :)

  • It looks like the inflammation is being controlled. If the pred has got your pain under control you are right it probably is PMR. Have you been dropped as a patient? Do you know what meds they want to give you? Methotrexate perhaps?

  • He is still seeing me. I am trying generic anti malaria medicine. Going to try and decrease pred after 6 weeks.

  • I assume you mean hydroxichloroquine. It is a DMARD like Methotrexate and is also used for people with Rheumatoid Arthritis. It will be interesting to see if it works.

  • Yes. He's had success with other pmr patients

    Will keep you posted.

  • Really? That is anecdotal then - because the one study done on it was poor but didn't find any help. It isn't one of the recommended options to "steroid spare". But if it works...

  • Yes seemed worth a try...

  • I'm on the anti malaria drug (hydroxychloroquine), and it has helped me, but it doesn't help a lot of people with GCA and even if it does help, half a mg a week is still far too fast!

  • I am glad to hear that it's working for you. Encouraging news.

  • What level were you at when you started the anti malaria drug and what are you on now? How fast were you able to reduce? Did you still use the dead slow method? Have you been able to stop gaining weight?

  • I think I was on around 20mg or a bit less of prednisone when I started Plaquenil. I haven't used the dead slow method. Plaquenil didn't stop me gaining weight at all, although I was able to stop gaining once I got under about 10mg of prednisone.

  • Hurray for that!

  • Well - most of what you have said is wrong (not the word I started to use though!). Science is not king - and the way doctors interpret labs does no service to some of their patients. They are only AIDS or guides to what is going on and for 1 in 5 patients or so they do not have raised blood markers in either PMR or GCA. That is why so many people are left to struggle for so long.

    We can't really help if your rheumy has such fixed ideas - unless you can find another. I have no doubt he would tell me that whatever I have it isn't PMR - but pred is the only thing that gives me my life back. It took a long time to get below 10mg/day. The fact your blood markers are "normal" just means you are taking enough pred to manage the inflammation - so there is never enough present to lead to raised levels. Shame he doesn't "get" the science!

  • Just found this thread but I wanted to chime in...I, too, am in the USA and from what I've read and heard, doctors are desperate to get us off pred as fast as possible. IIt's a fear of litigation issue.

    After a few weeks of steadily increasing pain symptoms, I went to an urgent care clinic in December 2016 and was prescribed 10 mg pred. Got some immediate relief, but was still in terrible pain for weeks until I could see a rheumatologist in January 2017. He upped the dose to 15, which was enough to keep me from getting worse, but wasn't clearing out the accumulated inflammation. He upped me to 20 in February 2017, and I finally started getting better, almost feeling normal by May. Through it all I went to work every single day except one day when it snowed. I didn't feel steady enough on my feet for the half mile walk down the hill over ice and snow to the first leg of my bus/ferry/subway commute.

    In May he dropped me from 20 to 18.5, and I suffered royally with leg cramps and Achilles tendon problems until I put myself back up to 20. It took 6 weeks to clear that new accumulation of inflammation, and now I still have residual swelling/pain in heels and ankles at the end of a work day. (Using cold gel packs overnight helps a lot.)

    He wanted me to take Methtorexate or Leflunomide as "steroid sparing agents". I refused. The "usual" side effects of each require being in close proximity to a bathroom, which is not an option with a 1.5 hour commute each way back and forth to work, along with regular meetings that take place outside the office. And since here in the USA our health care is tied to our insurance, and our insurance is tied to our jobs, quitting or losing my job is not an option.

    At our June 2017 appointment, he offered Plaquenil. After reading up on it, I wouldn't touch it until my opthamologist cleared me, as I have already had cataracts removed (long before PMR), and am legally blind in one eye (from having had the measles as a child). Though cleared my my opthamologist, I'm still reluctant to add this medication. From what I've read it won't do a thing for PMR, the bathroom proximity requirement is still an issue, and I only have one eye that works now.

    I dropped my pred to 19.5/20 on alternate days last week. This week I'm trying 19.5 each day, and will go back up to 20 if I feel anything negative.

    The damage done to my body by the inflammation is a lot more threatening to me than the side effects of pred, which can be monitored and controlled with proper care.

    As for his professional liability issues, they'll have to remain his problem. I have enough to deal with.

    Don't get me wrong - I believe in science. If I thought other medications would do more good than harm, I'd take them. I just don't see how taking these drugs - which are "off label" for PMR, are worth the risks. And since it is so early in my course of this condition, I want them available to me later if I need them, or if something else crops up. I'm only 62. There's a long way to go yet.

  • I also am 62. I have just started Dorset lady's reduction plan. So far so good. I don't notice any side effects from the plaquenil. I am due for cataract surgery next month.

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