Newly diagnosed

[HeatherBailey]

Hi all, I was just diagnosed with PMR, I'd had pain and stiffness in my shoulders, hips and wrist and felt fluey and exhausted. I'd had problems moving, dressing showering etc and was struggling to go to work. I was referred to the rheumatology dept and had a Depo-Medrone injection on Wed 18th, I had no change until this morning, when I woke the pain and stiffness were greatly reduced and I'm very happy with results. How long can I expect this relief to last and will these injections alone control my symptoms?

[suzy1959]

I was given one of those injections at the start of my Rheumatology journey. It lasted a month, as I believe they are meant to. It helped with the pain a lot, but I didn't find it as effective as taking the 15mgs Pred. I finally got 4 months and another Rheumatologist later.

[HeatherBailey in reply to suzy1959]

Thanks for this reply, really helpful to hear from people who have experienced this 😀

[Celtic PMRGCAuk volunteer]

Hi Heather, it's difficult to say how long the relief from the injection will last as it can vary so much from person to person. Some people say it has lasted a few months whilst others say it only lasted a few weeks.

As for whether the injections alone will continue to control your symptoms, that is also another difficult question to answer, again because we are all different in both the severity of our condition and the treatment. I am in touch with one person who has relied on injections alone, but she is still on those injections after six years. Most people I know who experience injections are usually given them as a top-up to the oral steroids.

[HeatherBailey in reply to Celtic]

Thanks for this, so relieved that I have such an improvement at the moment, I have an appointment at Rheumatology in a months time so hopefully it will last until then 😃

[dundinha]

Hi, I asked the very same question here after I too had my first depomedrone injection. Since then I've had these injections for 4 times, for me they seem to take full effect in 24-48hrs reducing symptoms by about 80%. I find I get 2 really good weeks very symptom free then in the 3rd week they progressively creep back until by the end of 4 weeks I've gone back to the rheumatologist for a repeat. In reading around it seems not many people are treated long-term on the injections I think that's because of the trouble/expense to keep getting the injections vs the simplicity of taking the oral equivalent. Although I did find one paper that suggested for milder instances of PMR the injection regime could offer some advantages over oral prednisolone due to a lower cumulative dose of steroid.

Here's a link to that paper

ncbi.nlm.nih.gov/pmc/articl...

My first injection was supposed to be basically a diagnostic tool to look for the response to steroid which is used to aid diagnosis after which if PMR is confirmed then I think it's more normal to prescribe the oral form if a PMR. The fact I've had repeat injections has been to tread water while longer term my rheumatologist decides how to proceed, I actually saw him yesterday and following latest blood tests he's very reluctant to put me longterm on steroids and actually backing away from PMR diagnosis instead now saying UCTD Undifferentiaded Conective Tissue Disorder and prescribe Hydroxychloroquine to deal with autoimmune disorder.

This is just my experience of course, one thing you'll hear over and over is that we are all unique and no guarantee any two experiences will be the same.

[PMRpro Ambassador in reply to dundinha]

I find that surprising - given your response to the pred. I appreciate everyone will be different with undifferentiated connective tissue disorder but a friend doesn't get any relief from anything for hers and chucked the tablets! If pred works why the refusal to use it? With PMR there is no choice and we really don't disintegrate! Fair enough if the hydroxychloroquine provides relief but if it doesn't I'd be looking for another rheumy if he won't allow you to try managing it with pred since it did appear to work.

[dundinha in reply to PMRpro]

Hi thanks for the comment. For me this change in direction came as a big surprise too which floored me at the time and I guess I'm still a bit confused, he rattled through some of the results on immunological blood markers so I assume he's seen something there. I'm going to wait for his report letter to see if I understand the rationale and then anyway I have a month before next visit to formulate my thoughts.

I think I read somewhere though that around 20/25% of initial PMR diagnosis are later revised to something else so this is not so uncommon. NB: Male, 50(next week), ESR 7 , CRP 5.5 so I certainly don't fit textbook profile (even though symptoms do - initial bilateral shoulder & groin pain with tons of general stiffness worse for hours in the morning and 24/48 hr response to steroids) and I will admit thankfully I'm at the milder end of the spectrum compared to some stories i've read eg I can still exercise lightly especially weeks 1-2 after depomedrone injection.

So your friends hydroxychloroquine experience was no good, that's not very encouraging, I'm going to go off and do some research on it and UCTD, maybe I'm going to find out I'm in the wrong forum

[PMRpro Ambassador in reply to dundinha]

Her response to EVERYTHING they tried was poor - she just got side effects! What I'm saying is that if you have a patient with PMR symptoms who gets a good response to a moderate dose of pred - please always bear that in mind for the case you DON'T get a good result with other things.

The most likely patients to be "atypical" with normal blood results are the younger ones. However much the consultant wants it to be something that fits their personal preference that is irrelevant in the end.

[HeatherBailey]

Thanks for this, really useful 👍

[Green_girl]

I would agree with what Dundinha said - I had these injections for a year, in much the same way, and found them really good at controlling symptoms. I was allowed this more expensive way of giving the drug because I have problems taking chemical drugs orally. I had only one flare too - and that was because I had been too ambitious in reducing the dose too quickly on one jab. I found that the side effects were not nearly as bad as those experienced by oral steroid takers (though I now have osteoporosis and the start of a cataract).

I was not diagnosed for nearly 8 months and was in a pretty much disabled state on starting with the jabs. At a year in I was doing much better and the jabs were beginning to be reduced. During the second year they were tailed off completely (I did have Methotrexate - a steriod sparing agent - as well at this point, due to the osteoporosis and think that this helped too), 3 years on and I'm now free of PMR and drugs. As was said, we are all different, and I do know that jabs don't work for everyone.

Heather, I do hope these work for you, but whatever drug you end up, on keep talking to your Rheumy and keep notes - and keep asking questions! I wish you a return to good health in a similar timeframe.

[HeatherBailey]

Thank you, I hope good health continues for you too