PMR or something else??? Please help!!

[KaJoLe]

My mother has had PMR for over 2 years and has recently weaned off the steroids on drs orders. Blood tests show negative for PMR now. But she is experiencing consistent very bad pain in arms and legs. While still on the steroids Dr upped her dose to try and help, but it did nothing, so he continued to wean her off again as PMR levels were very low at the time.. she can’t take any morphine derived medication, others also make her sick.. she only takes Panadol, it does nothing.. I am desperate to find something to take away her pain.. is this a common thing after PMR, even when the bloods show it is gone??? She wakes up in the middle of the night in pain, but afraid to move and make it worse.. over the last 4 years, between hip surgery, then a repair surgery on the same hip, then a heart attack (from the pain after hip surgeries, because she can’t take anything for it) then the PMR, and cataract (caused by the steroids) surgery, and now this excruciating pain and fatigue post PMR.. before all this she was walking her dog 5 km a day and loving it.. now she forces herself to walk 500 m just so she can get out if the house.. I want her to be pain free so she can enjoy the rest of her life.. she is 76, I’m scared that at this rate she won’t live long.. I have been looking into medical marijuana.. she is so desperate for help that she wouldn’t hesitate to take it.. but I need to know that it is going to help before I go to that expense..

[Hidden]

Hi, I am sorry your mum is suffering. You mention pmr blood tests. I am afraid there is no blood test that is definitive for pmr. Basically Dr use symptoms, the inflammatory markers in the blood, and reaction to pred. Sadly Dr's belief that all pmr sufferers are done with in 2 years and are mistaken and if pred works it is removed reduced too fast . It is strange that if the inflammation markers were raised at the initial diagnosis that they aren't now....however they often lag behind the pain. The fact the pain is not touched by painkillers is indicative of pmr pain. I would be seeing another dr and asking for a test run of pred again and a referral to a rheumatologist. If you can pay there are several specialists in pmr if you are in the UK that she can see for an Initial Consultation.

I can't lay my hands on full figures at the moment but 1 in 5 can go into remission after 12 to 18months but the average pred treatment is 5.9 years so its still early doors perhaps. I hope you get it sorted soon.

[Hidden in reply to Hidden]

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[MhairiP]

So sorry to hear your mother is suffering so much. Can I check I'm understanding correctly - the steroids did nothing to help the pain? How much was she on, and for how long?

If pred didn't help with the pain, it suggests that maybe she didn't have PMR.

[SnazzyD]

I think a change of doc is required, stat. For one, PMR isn’t usually done after 2 years. Inflammatory markers in the blood can be helpful but are not a reliable guide to autoimmune disease remission. Also, has the doc made any allowance for adrenal function that is probably still impaired and not back on line yet after the Pred. This can make one feel quite ill. What dose did she start on and did it do the trick?

[Blearyeyed]

It could well be that your Mother still has PMR after two years and tapered too quickly but that her current GP was not as knowledgeable about the condition and the possibility that it can take longer than two years and she needed higher Pred doses for longer.

She could do with speaking about this with your doctor ,with you as support, or finding a second opinion from a Rheumatologist.

You do mention that at some point in your Mother's Care that she received more Steroids as the pain hit her left arm but it did not help. Obviously , its effect would have had a lot to do with which dose she was increased to , if it wasn't enough it may not have done the job.

However , this may also mean that there was another condition going on at the same time your Mother had PMR , this can happen , many of us have more than one Health condition and they all need there own treatment to help manage different types of Pain.

Has you mother had proper examinations for things like Rheumatoid Arthritis , Osteoarthritis, Joint issues or Muscle or Nerve conditions , like Fibromyalgia , Carpal Tunnel etc.etc???

If the answer is No , these things need properly examining and all things ruling out because they all cause intense pain and stiffness and need treatment in themselves. Including a Dexascan and Synacthen Test along with blood tests and x-rays. Dependent on her symptoms she may even require full body pain assessments , nerve conductivity tests or some scans.

If your Mother has intolerance issues with opiates or certain other pain relief drugs she also needs referring to a Pain Specialist to discuss this and her condition . They will work out a list , or combination , of medication she can trial , under supervision of them or your GP, to find something which is more suitable for her and her Pain needs . She may need these alongside a return on steroids. They may suggest injections into joints dependent on her diagnosis. They also probably help with advice on Self Care and suggest and provide Physio. She may have a need for things like her vitamins and minerals to be increased , things like Vitamin D , Vitamin B Complex or Electrolytes.

They may even consider CBD as a pain management option in the future . But you are better getting medical advice about the right type and doseage she would need for her treatment needs. Without that knowledge it will not give the level of pain relief that it could.

I have said Pain Managed , as depending on which conditions we have many of us do not become 100% Pain Free . You are looking for a level of Managed Pain that allows you to take part in Moderate Physical Activity without extra Pain and Stress.

There will be options out there , but getting back to your GP with your questions or requests or making an Appointment with a Rheumatologist with a good knowledge of PMR , but also other conditions, is your first port of call.

Good luck , don't give up , there is hope out there , and please keep us posted .

[PMRpro Ambassador]

There are no tests to show PMR has gone - that is a clinical equation, no pred and no symptoms equals no PMR. It works the other way - there are not definitive tests other than PET-CT to confirm PMR and that only works when the patient is on a low enough dose to allow inflammation so is most informative before pred or during a big flare. It might well be appropriate now.

Has her adrenal function been checked now she is off pred? That may still be suppressed, it doesn't return automatically just because you tapered off pred. Many patients complain of muscle aches and pain for some time after stopping pred - in general it is felt it takes up to a year to be back to anything like normal but assessing normal is difficult when you are also some years old in the meantime!

It does sound as it if it is something more than "just" PMR - the back pain in particular isn't really typical. But she needs a better doctor who thinks outside the box and is better aware of the facts surrounding PMR. Did she get relief with pred originally? If so when did the pain return and how did the doctor try increasing the dose to relieve the pain unsuccessfully?

[venezia1]

Hi - so sorry to hear your mum's story. Not sure I can add anything to previous comments - my pain relief for RA, Osteo, GCA and fibromyalgia is a combination of morphine (at night), and paracetamol as I can't take ibruprofen etc. It doesn't always help much. I hope you can find a better solution.