PMR

[Boomer63]

I was diagnosed with PMR 6 months ago and put on Prednisone. I've decided to tapper off after calling my Dr. I am down to 1ml for another 2 1/2 weeks. My pain is controlled with 600 Ibp, extra strength 2 tabs Tylenol and 2 tabs aleve, I take one of these and the one dose helps me function with out pain 24 hrs. I would like to know if or what I can take at this point to build up immune. Probiotics, but. C? How long does Prednisone stay in your system? Thanks

[DorsetLady PMRGCAuk volunteer]

Hi,

First question would be why have you come off Pred to replace it with other pain medication which in the long run may be more damaging than the Pred itself.

You do realise that nothing will actually cure the PMR, and that you could have it for a very long time. Plus of course all the time the inflammation in your blood vessel walls is not controlled by the Pred you could be doing your body more harm. But of course the choice is yours, and I'm sure you have good reasons for not taking Pred.

Not sure that you really want to be boosting your immune system when that's what causing the problem in the first place.

I've been off Pred for about 9 months now, and feel almost back to normal, but it is suggested it can take anything up to a year for your body to be completely clear. Mind you, that may vary depending on how long you've been on it and at what doses.

[HeronNS]

What DorsetLady said. Plus, pred doesn't stay in your system very long. It's not something which the body stores and which builds up. You metabolize it and excrete it every day - the exact efficiency varies from individual to individual. Any side effects you may have experienced should reduce quite quickly as the dosage also decreases, although any muscle weakening will of course take time to recover from.

[PMRpro Ambassador]

Why do you want to "build up your immune system" - when it is overactive immune systems that cause the problem in the first place?

I also can't imagine why anyone would choose to take long term NSAIDs and paracetamol/acetaminophen instead of a very low dose of pred.

[piglette]

Hi Boomer, I am surprised that Tylenol and Aleve give any real relief if it is PMR you have got. Normally it is steroids only that have any real effect. Do you think you have something other than PMR?

[Boomer63]

Hi, I want to thank you all for responding. Hopefully I can answer some of your concerns. I had a fall about 7 Months ago, I got up after a few minutes and seemed fine but a little stiff. Five days later I could barely move, I was in so much pain. I called a friend who is a chiropractor and went in immediately. Had some treatment which she helped me tremendously with my sciatica. However my shoulders especially my left side, down to my wrist continued with excruciating pain. Went to see my Dr and after blood work and giving her all info on my pain areas she diagnosed me with PMR. She was going to prescribe 20 ml of Prednisone but I told her I would like a second opinion and she was fine with it. So then I saw a rhumatologist, she said let's start with 20 ml. Well after a few days I felt brand new, however my left shoulder still painful especially in the am before getting out of bed. Now I go to see an orthopedic have an MRI on left shoulder find out I have a small tear on my rotor cuff tendon. So he gave me some Exercise to do and will see me in three months also if pain continues he will give me an injection. So after researching Prednisone. I spoke to my Dr and asked to be tapered off Prednisone. I'm down to 1 ml and a little more then 2 weeks to go. I do take ibp , aleve or Tylenol because I feel great. Aleve now 2 tabs last 24 hrs. Same with Tylenol, ibp 600 last 24 hrs also. I'll take one or another for a few days and stop a few days. I don't plan to take NSAID for long but I will not take Prednisone, it really really compromisess my immune system even more among other things. Do I have PMR is a question I've been asked...... I have the symptoms but they do go away with NSAID. I will stop taking anything to up my immune since .......what PMRpro said made sense. Hope HeronNS is correct about Prednisone not staying long. There is something else I plan to take, if it works I'll let you know. Again thanks for quick response!

[HeronNS in reply to Boomer63]

Ah, it does sound as though this was a reaction to your injury, which could seem like PMR, and as you say your pain responds to the NSAID I think you may have made the right decision. I am right about prednisone not being stored in the body, but the side effects can linger a bit. What side effects did you have? I had increased ocular pressure which improved as my dose decreased. I had high blood sugar which I controlled with diet, and now it's completely normal at a low dose. I also seem to have lost muscle mass, but am hopeful that this too will improve, although it's slower to go than the other effects were. Probably you weren't on pred long enough for this effect. I never gained weight which seems to be the big fear of most people and after my dose reduced I seem to have become as resistant to bugs as I always was although I did have a couple of colds my first year.

My personal choice would always be to go to a physiotherapist for an injury such as you experienced rather than a chiropractor. Your experience doesn't make me rethink that! Sounds like you are in good hands now. Hope you are well on the road to recovery.

[Boomer63 in reply to HeronNS]

Thanks for response, I got one infection, and gained 15 lbs in four months, I have always been into horses, and truly miss riding. I'm hoping this is all do to the injury I had gotten. However if not once I'm off pred. I'm going to try something else and hope it helps with the pain so I won't depend on NSAID. Going to look up physiotherapisy don't no anything about them. Thanks. Boomer

[Bittebitt in reply to Boomer63]

Two different NSAIDs, is that wise? Have u asked your gp about it?

[PMRandRA]

I cannot understand why your doctor agreed to taper you prednisolone, yet prescribe two of the most dangerous analgesics known to man! Tylenol, I would not have in my house, let alone in my body and extra strength to boot.

I apologise for being so appalled at such a decision, or should I apologise? Maybe not.

So why not just stop taking the very effective Pred, which does not stick around in the body as each reduction lessens the amount left. Tylenol on the other hand is cumulative and addictive.

I am afraid it is your choice, but definitely not the choice I would make.

Good luck.

PS. Have now read the other replies and find myself very sceptical about the diagnosis of PMR! The first thing I would be doing is to find another Doctor!

Take care. 🌸

[Linnetbird]

Think you are very wise and wish I had done the same. Been taking Prednisolone for 18 months and tapered down to 5mg but now suffering more from side effects of steroids than PMR and PMR symptoms still with me. On Steroids my muscle strength went from 80 to 35 in 6 months; steroid related cataract grew; became overweight with fat round my middle (from size12-18) and hamster faced; feel need to urinate constantly; and feel very depressed. After initial miracle! cure on 15mg steroid for one month, on tapering all aches of muscles, joints, fatigue returned and I still cannot walk far. If I do too much one day I have to rest for the next 3. I have also tried taking pain killers to ease the pain if I need to do something and then rest afterwards. This has been just as effective and would not have given me the side effects! I'm not convinced prednisolone is the answer apart from the fact the tablets are very cheap. Be very interested to know how you get on. Good Luck.

[DorsetLady PMRGCAuk volunteer in reply to Linnetbird]

Hi, all the symptoms you relate are just as likely to be the PMR still being active - in which case you are probably not taking enough Pred. At 18months period it is extremely likely your PMR is still going strong .

Whilst I agree that loss of muscle strength can be a side effect of Pred, it could also be an effect of untreated/poorly treated PMR - so don't put all the blame at Preds door.

Your fatigue at 5mg could also be related to your adrenal glands not up and running again.

I know it's easier said than done, but don't "do too much one day". You have to learn to manage this illness, not let it manage you, and that means pacing yourself- even on the good days.

[PMRpro Ambassador in reply to Linnetbird]

Apart from the cataract I had all those side effects in the first 5 years I had PMR. And they were the PMR, not pred. How do I know to be so sure? I wasn't on pred. After 8 years on pred I have no cataracts (I wish) and have lost not only the pred-associated weight but also the PMR-associated weight - all 36lbs of it, and while still taking pred at between 10 and 15mg/day. I have no side effects that are obvious but I have worked fairly hard at avoiding them.

There is no cure - the pred is managing the inflammation. So if you reduce too far, the symptoms will return. The idea is to find the lowest dose that does the same as the starting dose, even a small amount too little won't work because, like a dripping tap will fill a bucket, the little bit of left-over inflammation a day will mount up and soon overflow into a flare.

You cannot blame pred for it all - you have to do your bit too in all sorts of ways.

[PMRandRA in reply to PMRpro]

PMRpro: Why did you put " (I wish)" after you have no cataracts? It makes it seem as if you would like to have them? I am certain you wouldn't though?.

[PMRpro Ambassador in reply to PMRandRA]

I would, believe it or not!

I have worn glasses since I was 7 years old - I am very short sighted and put my specs on before I even get out of bed! I did use contacts for a time but PMR (and cost of dailies which were the only possible answer) put an end to that and anyway I still needed specs.

If I had cataracts I could have them removed and even with single vision implants I would be able to "just" use reading glasses which I do most of the time anyway now. The freedom to NOT wear specs most of the time and a CHOICE of sunglasses that don't costs hundreds of euros (I live in Italy, I need them a lot of the time) - very appealing....

[Loco99 in reply to PMRpro]

I agree with you completely concerning cataracts, I have just had two steroid related cataracts removed and replaced with single vision implants. PMR and Prednisone have done me a huge favour by contributing towards my cataracts and now they have been removed my eyesight is fantastic. I feel fortunate to have had the operations at the relatively early age of 61 giving me more years of good vision. At first I was depressed to hear that I had cataracts but they have turned out to be a blessing in disguise.

[PMRandRA in reply to PMRpro]

Interesting PMRpro. My vision is also impaired but with loads of floaters which escaped when I had flashes and the retina lifted and floaters escaped. Loads of 'em. Including the so called doughnuts which lived around the optic nerve.

Hospital could find nowt wrong yet not long after I had GCA!

[PMRpro Ambassador in reply to PMRandRA]

It is rather difficult to see problems with the optic nerve - although the optic nerve may appear paler than normal and swollen IF there is poor blood flow to the nerve itself. In some cases the blood flow to the retina itself may be affected though it is rare. It would be wonderful if there were some obvious signal but the reality is - there isn't until sometimes it is already too late.

There is a condition called Anterior Ischemic Optic Neuropathy (AION): "a medical condition involving loss of vision caused by damage to the optic nerve as a result of insufficient blood supply (ischemia). This form of ischemic optic neuropathy is generally divided into two types: arteritic AION (or AAION), where the loss of vision is an effect of an inflammatory disease of arteries in the head called temporal arteritis, and non-arteritic AION (abbreviated as NAION, or sometimes simply as AION) due to non-inflammatory disease of small blood vessels."

Regular visits to an optometrist are very valuable - even if you have to pay. They can identify a LOT of things that may be going on!

[Bittebitt in reply to PMRpro]

Couldn't resist s remark: the ophtalmologist I used to work with used to say :if the ophtalmologist can't see anything (wrong) and the patient can't see anything, It's the optic nerve.

[PMRpro Ambassador in reply to Bittebitt]

Seems a fair assessment to me!

[moskin]

I agree Linnetbird,I am the same,but 4 yrs of steroids and wish I had never started.I am overweight,fatigued,cannot play golf now,down to 4.5 and reducing.My rheumatologist me off it .

[piglette in reply to moskin]

Dear Moskin, you cannot expect anything to cure the symptoms of PMR as they have not been discovered yet. Like Linnetbird I Have taken Aleve for pain other than PMR, it has no effect on the PMR at all. There is no way I would want to go back to the pain I had before I was diagnosed with PMR.

[moskin in reply to piglette]

Thanks Piglet,Its such a debilitating disease,and yes I was grateful for the steroids.I am just hoping to get off them .My crp has been okay for quite a while now.we shall see.

Thanks

[PMRpro Ambassador in reply to moskin]

We all want off them. But your CRP has been "OK for quite a while" because you are on enough pred to suppress the inflammation. It does not mean that the underlying cause of the PMR symptoms has burnt out and gone into remission. You can only know that when you have weaned off the pred and stopped taking it - and no symptoms reappear. If it is gone - you will be able to wean down the dose without too many problems - providing your adrenal function plays the game too.

[ValFF53]

Hello

I am sorry to hear that you have been in so much pain and pleased that you have gained relief from it. I have to say, like others have said, I wonder if you have PMR as your symptoms are not classical and NSAIDs do not for PMR. Additionally, virtually all drugs have side effects which affect people in different ways. I know that steroids probably have one of the worst list of side-effects and are only used as a last resort. However, I think it is very important to realise that Prednisolone is not just prescribed for pain relief.

PMR is caused by inflammation in blood vessels (vasculitis) and steroids will reduce the inflammation and subsequently the pain.

It must be realised, too, that untreated vasculitis puts people at more risk of getting other conditions such as GCA, strokes and heart attacks.

I understand that doses of 5mgs and under (when one can taper that low) cause minimal side effects and so, without doubt, I would far prefer to take Prednisolone than any other medication to lower the risk of the serious illnesses I have previously mentioned.

Kind regards

[Bennifred]

I am in awe at how well you all describe what PMR is and how taking steroids treats the inflammation but not the underlying disease - it's taken a while for me to get my head around it (I thought I understood, then it "slipped away" and it was obvious that I didn't, really ) So thanks for persevering - I bet I'm not the only one benefiting!

[Boomer63]

ValFF53.........Thank you for the information it's something I'm struggling with. I'm waiting for my blood work, bone scan and a visit with my Rumatologist. I was under the impression that taking Ibuprofen also brings down the inflammation. I was told to continue to take until my Drs visit and test are in. I feel that my taking 600 mil every 24 hrs and feeling very little stiffness until the next morning is a better option for me then Prednisone. I will now see an optometrist regularly thanks to your little blog. I know nothing about cannabis except for the fact that it's legal here where I reside. I will be giving that a try soon. Again I'm a sponge for information thank you! Boomer63/ Rose from US

[PMRpro Ambassador in reply to Boomer63]

Don't imagine though that ibuprofen is a "safer" option than pred. It isn't. It has considerable side effects when used long term. One lady was told by her GP to use ibuprofen and after just 3 doses was in the ER with a gastric bleed. If PMR lasted just weeks then perhaps that is fine for many people. However - it doesn't, it generally lasts years.