I thought I would give all you lovely helpful people an update after the PET CT palaver and changing back to my previous consultant. The next drug for me to try help reduce the steroids is Dolquine which is a DMARD. So far I have taken 400mg a day split by 12 hours for 26 days. I have reduced my prednisone from 17.5 to 12.5. I have a review in 2 weeks with full blood workup when hopefully I will be moved to 10mg prednisone and 200mg Dolquine. The plan is to then stay on this for a couple of months before reducing the prednisone further more slowly. I have not been below 10 mg in the last 3 years.
So far the results have been spectacular, I have no PMR pain at all, no morning stiffness and managing to do all I need in my fulltime job.
2 weeks ago I had a severe episode of food poisoning resulting in hives as I reacted to the bacteria and a needing drip to regain fluids, I expected a flare which didn't happen. I have no side effects so far from the Dolquine so feel much better than I have done in the last 3 years. I say this to give other long timers hope that eventually something may come along which gives us some positivity although I am not counting my chickens.
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Pawscat11
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Just to check - you did have an eye screening before starting it? You need one regularly, some say 6 monthly, as that is one of its less attractive sides.
There is someone else on the forum doing really well on hydroxychloroquine. It will be very interesting to find out which version of PMR responds to HCQ!
Yes full eye screening with many photos and different machines before being cleared to take it and scheduled for 6 monthly. O also checked with my UK optician as he had just given me new glasses and he agreed I should be fine, he actually said while he checks many people as long as you don't start with the problem he personally hasn't seen it develop in anyone he has checked.
OK so far Pawscat11, but they forgot to tell me not to drive so I've got to go back for the other half next week! She gave me an Amsler chart to do a check once a month. I take 300mg, which is the most I am allowed.
Haha they did the same to me but only told me afterwards. I am on 400mg for the first month then 200mg to see how we go. Tested positive for COVID today so praying that doesn't set me back as it really did last year with delta.
OH and I got it whilst on a cruise last month. Had to stay an extra week in a hotel in Malta. We weren't too bad. Felt a bit worse after the event TBH and had a minor flare recently. Hope that you don't suffer too much.
PMRpro; You might be referring to me. I did successfully switch to Hydroxychloroquine after getting the Prednisone down to 7.5. Because of Macular Degeneration, my ophthalmologist wanted me off of Pred.
Over the space of about 7weeks, I took 400mg HCQ (split morning and night) while quickly reducing Pred by 1 mg per week. This worked for me very well. No increase in C-reactive protein levels, (a marker for PMR activity). I also to Methotrexate (200mg x 4 once a week) and Folic Acid (100mg daily) for almost a year, before eliminating both. Meanwhile I slowly reduced the HCQ and after 18 months, only take half a pill (100mg).
I have had no flairs of any consequence (possibly a little flair when I finally got covid). I get complete bloodwork done every 4 months, and, so far, so good. Even the Macular Degeneration progression has stopped (but does require a shot in the eye every 8 weeks).
Once again. I want to remind everyone, that statins (prescribed profusely and indiscriminately for high cholesterol) may be the source of your PMR pains and stiffness. You might consider talking to your doctor about that link if you are on statins.
Interestingly I have only just started taking statins so it certainly wasn't the cause of my PMR but there is already discussion of alternate days like yourself. I dont think I hace had any extra pains because of them yet.
Thanks for your posting Pawscatt, and to all that have replied.
After a month of excruciating pain I was diagnosed with PMR in late April this year. Although I can’t do all I once did, I am in pretty good shape thanks to the wonderfully informed people willing to share in this forum, aling with my GP’s willingness to provide adequate access to prednisone.
On August 9th I met with a rheumatologist for the first time, and was prescribed 200mg tablets of Hydroxychloroquine to be taken once a day. My Rheumatologist claims it takes several months of steady use, but once established in the system, that it allows for a faster reduction in prednisone use.
After reviewing some posts on this forum I opted not to take the HCQ, and have been pain-free and comfortably mobile as I’ve reduced to 6mg of pred, I did try going to 5.5mg, but got some increasing discomfort after a week, which disappeared after 3 or 4 days at 10mg. I then went right back to 6mg, where I’ve been comfortable another month.
As it is obvious my PMR is still active, I am wondering if I should give HCQ a chance, in the hope I may be able to get down to 3mg of pred or less?
Yes, thanks. When I was given the prescription she also arranged for an eye exam. Everything checked out fine and that doctor said the risk is low, the progress of any problem is slow, and booked me for regular annual exams.
Do you think it’s worthwhile to try this DMARD in the hope it may allow accelerated reduction in prednisone?
It is probably going to be like all the DMARDs, it will work for a small cohort of PMR patients. The only way to find out with any of them is to try. But the experience of the lady over on Lupus disputes your doctor's belief. She was fine one year, very much not the next.
I provided a link above which is to a post on the Lupus forum where someone has now been diagnosed with eye damage due to HCQ - one annual test was fine, this year's is not.
Found it, thanks. Damn scary. I wonder what her dosage was, and whether short term use is of any offsetting benefit? On the other hand, it appears she had symptoms return as soon as she stopped, so trading one medication for another doesn't seem to be progress unless you're trading up, not potentially making things worse!
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