Advice needed

[Countrykitten]

Hello PMR people. I have been logging on to health unlocked thyroid uk since being diagnosed 6 or 7 years ago and found it very helpful to hear of the experiences of others. Now I've developed PMR, so I'd like some advice please.

Recently, my Osteopath, who has been treating me for many years, wouldn't touch me at my appointment as my symptoms were additional to my usual ones . Both arms very stiff, felt as if I was carrying a heavy weight across my shoulders etc, and felt even more exhausted and unwell than usual. She suspected PMR and wrote to my GP. Five weeks later I had an ESR blood test which came back 'normal'. I tried several times to talk to a doctor to explain I still have symptoms ( and I know that you can have PMR without raised ESR) My Orthopaedic surgeon suggested I see his Rheumatologist colleague privately, who confirmed what I already knew re blood tests. He gave me a steroid injection into my buttocks as he does not think I should take oral steroids.( I have Osteopenia and Hypothyroidism)

Within less than forty eight hours the improvement was miraculous. I told him this when I had a check up after four weeks earlier this week. He was pleased with my progress and said he would write to my GP to ask her to repeat the injection as necessary. I don't hold out much hope of getting help through NHS, but if I have to pay for the injections I will do so. I now would like to ask anyone on this forum who has injections rather than pills if they can get them on NHS, and also, how long does the effect last? The Rheumatologist said he has some PMR patients who only need injections every few months. Whilst I still feel a lot better after five weeks, my energy levels have dropped and I am beginning to feel stiffness and pain returning to both upper arms and shoulders. How long should I leave it before trying to contact my GP?

Any advice would be greatly appreciated. Thank you.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

There are quite a few members on here who have hyperthyroidism , and take oral Pred, sure they’ll be along shortly to advice.

As for osteopenia, even with oral Pred doesn’t necessarily mean it will become osteoporosis - maybe have a look at this link re bone health from FAQs -

healthunlocked.com/pmrgcauk...

Not sure many have injections only, think some may have started down that route,and then found they didn’t last long enough…as you are beginning to now.

The problem is how often they can be administered, and if that’s not regularly enough to control symptoms, then you run the risk of allowing the inflammation cause by your underlying illness to build up and maybe affect the rest of your body and organs….

For your info, maybe have a look through this information post -

healthunlocked.com/pmrgcauk...

As for contacting your GP, sooner the better really, and perhaps you should consider all options - oral Pred as well as injections…hopefully replies from here will enable you to have a think before you see GP.

Please let us know how things go.

[PMRpro Ambassador]

tangocharlie had injections originally - but her rheumy didn't know how to use them properly. 5 weeks isn't bad - the original paper by Dasgupta was 3 weeks:

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

I have know a few people who had the injections, one even for GCA as she couldn't tolerate oral pred. Some did well, others less so. Helps to have a doctor who knows how to use them.

But there are people on the forum with both osteoporosis and hypothyroidism so osteopenia shouldn't pose too much of a problem! I bet almost all of us would have osteopenia on our dexascan results - all depends on the t-score. Mine was -1.3 when I first started pred, after 12 years on pred and no bisphosphonates it had wriggled down to -1.6. Still in the range where no treatment recommended. Loss of bone density on pred is NOT inevitable.

[tangocharlie in reply to PMRpro]

I had depo medrone injections which worked fantastically but unfortunately the rheumatologist didn't know how to use them properly as they are not familiar with them and the gaps between injections were too long. They are more familiar as using them as one-off injections into joints or in cases like yours rather than for systemic use. On average they last about 3 or 4 weeks but the ignorant rheumatoligist tried to tell me at first I could only have one every 6 months (as for joints), then I managed to cut that to 3 months and in the end about 5-6 weeks, but that still wasn't enough so caused flares, relapse and adrenal problems. It's crucial to get the interval right and there isn't much info or research about that. The product information leaflet that comes with it says it only lasts up to 3 weeks. There isn't much research or info on them as they tend to be given as one-offs rather than regularly, I had to really push for them, but my rheumatolgists were willing (eventually) to try Dr Dasgupta's protocol . They worked fantastic but unfortunately because I was forced to decrease the dose according to the protocol and increase the interval it all went very wrong and now I'm back on oral Pred. If you have 'classic' PMR the reduction might be OK, but for me it wasn't then enough to control the PMR. Hope this helps, good luck, I think the injections should be more widely available as they work well and hae fewer side-effects.

pubmed.ncbi.nlm.nih.gov/956...

rxlist.com/depo-medrol-drug...

[PMRpro Ambassador in reply to tangocharlie]

Reducing the frequency of the injections is no different from reducing orally dosed pred. If the doctor doesn't understand that you need what you need - you will still get in a mess!

[tangocharlie in reply to PMRpro]

Exactly, and also how I ended up with adenal problems again. I discussed the possibility of going back on injections with Dr M but we concluded it was too complex for a long-timer like me with frequent flares to get the dosing right. Probably OK for 'classic cases' but no way of knowing if you fit that category. I have happy memories of feeling wonderful for a while. It takes about 25mg of Pred to feel the same so the overall cumulative dose is much higher compared to the 120ml injections which lasted 3-4 weeks, plus I didn't have the side effects of moon face and insomnia etc

[SheffieldJane]

I find the advice about injections quite odd. I haven’t encountered it before. I have Graves Disease ( no thyroid function - knocked out medically) and probably a bit of Osteopenia by now, I’m waiting for DEXA Scan results. I have taken oral Pred since the word go without issue. I would save my money and get NNS oral Pred between 25 mgs and 12.5 mgs as a start dose. I did well on 20 mgs then a taper ( outlined on FAQs).

[Meggsy]

I had slight osteopenia over 4 years ago when I began on 25mg pred. Presently on1.5mg and hardly any change in my bones at last scan. I take vitaminD3, calcium and vitamin K2mk7 plus walk daily and gym a couple of times a week.

[piglette]

I don’t know why your rheumatologist is against oral steroids, but I must admit, personally I would prefer taking tablets orally as I am then in more control than having to rely on some of the whims of appointments either with the NHS or private systems. If I had problems taking oral tablets I then would go ahead with injections.

[Countrykitten]

Thanks everyone. I'm waiting to find out if my GP surgery has had Rheumatologist's letter. Feeling really grim again today. I don't know if it's PMR, thyroid,my usual arthritis (widespread advanced according to Dr. ) or feeling grim because I'm waiting (endless waiting list!) to have my gallbladder removed so lots of pain from that. I'm just exhausted. Fun getting old isn't it!! (Also waiting for surgery on ankle/foot.)Dr ringing me on Tuesday to discuss latest DEXA scan. Previous T score -2.3