Trying to sort my polymyslgia without steroids.Is anyone else doing this?

[Angela6463]

Trying to sort my polymyalgia without steroids. Is anyone else doing this?

[HeronNS]

What, specifically, are you doing? How long have you had PMR?

[Angela6463 in reply to HeronNS]

Got it last June. Two close family members went blind with glaucoma, so I don't want to risk that by taking steroids. Also - I have not heard of anyone coming right off steroids. I'm sure there are such - I just haven't seen the evidence.

I lake Ibuprofen - 200 mgs every 12 hours. Originally every 8 hours, and will continue to reduce. Plus Gavescon Advance to neutralize the acid. Also turmeric, aloe vera, vit D, fish oil and magnesium.

I eat nothing with grains in it, so quite a low-carb diet. Try to keep up with exercises to avoid loss of muscle tone.

Thanks for your interest.

[jinasc in reply to Angela6463]

I had GCA for 5 years, then remission and no steroids for since and into 8th year.

I started on 60mg to save my sight.

Other will be along to tell you that they are off steroids after 18mths, 2 years, 4 years and a few odd times in between and a very few who have not been able to get off steroids.

If does not follow that because you have 'not heard' to assume there are none.

[HeronNS in reply to Angela6463]

I never found other painkillers had any effect on PMR, although they do marginally help my osteoarthritis if I take some for a headache or something (nsaids interfere with cartilage regeneration so best avoided if one has arthritis). Your general lifestyle sounds healthy, and much like what those of us on pred do as well. Good luck with this. You have managed since June 2018?

[IslandRN in reply to HeronNS]

Same here....nothing other than steroids touches my PMR pain

[PMRpro Ambassador in reply to Angela6463]

It isn't a simple equation of pred bad, no pred good.

You are more likely to go blind from GCA without steroids than lose your sight due to glaucoma with them. Eye pressures are not always raised as a result of pred, mine haven't budged in over 10 years. You know there is a risk so would have your pressures monitored.

Ibuprofen isn't an innocent either, its long term effects on the cardiovascular and gastrointestinal systems are considerable. It may help some of the pain but for most patients it does nothing and to be honest, if it does help the pain, most of us ask if it really is the same pMR we discuss!

jinasc who has replied to you below had GCA for 5 years and has been off pred for 8 years now. DorsetLady will appear later, she too spent 4 or 5 years on pred but is in remission and off pred. She, however, lost the sight of one eye and spent a very scary 2 weeks waiting to see if the high dose steroids (80mg I think to start) had saved the sight in the other eye. Once one eye is gone there is a 50/50 chance the other will go too within a couple of weeks.

I know personally of at least 3 or 4 other GCA patients who got off pred - but they are all away getting on with life, some of them running support groups across the country.

[jinasc]

Be very very careful, whatever you are doing without taking pred.

The last thing you want is run into PMR's big sister, GCA

[PMRpro Ambassador]

About once or twice a year someone posts a question like that. There are many of us who use complementary means in addition to pred - but very few who don't take pred at all. Why? Because it is the only thing that relieves the inflammation that causes the symptoms.

Not taking pred for PMR makes it more likely that the PMR will progress to become cranial GCA, giant cell arteritis affecting the arteries in the head. The ultimate adverse affect of that is irreversible loss of sight. The treament is very high doses of pred, at least in excess of 40mg/day to start. But taking a relatively low dose of pred, 15-20mg/day is a typical starting dose, not only do you have a much improved quality of life but you reduce that risk considerably.

I had 5 years of PMR without pred. I never had a day without pain, I was bad-tempered and depressed. And when I finally was allowed to try pred - it hadn't been a choice, I wasn't diagnosed - I realised how disabled and reclusive I had become. I wouldn't go back there if you paid me,

[Yellowbluebell]

I personally would not be prepared to risk my sight by not taking pred for my pmr and it progressing to gca. I also like pmrpro had pmr for at least two years before diagnosis and would never go back to that pain just to avoid pred.YBB

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome,

The $64 million question that most new patients ask....wish I had a dollar or pound for how many times I’ve read that.

Many refuse steroids at the beginning of their journey, but find that after trying other methods of controlling the symptoms including diet, supplements, alternative therapies have to eventually admit defeat and go down the route of Pred

I appreciate you do not want to take Pred - who does? Who wants to take any medication? But sometimes you have to.

If you don't take Pred, then left untreated your PMR will probably get worse before it gets better. Most people go into remission when the underlying PMR goes away, but not always.

There have been posts about natural remedies before, so try typing that question in the search button. I guess some people may get through without steroids, maybe through choice or mis-diagnosis or maybe a milder form of PMR. However I doubt many are on this forum, they probably see no need for it.

However, there are people on here who were virtually bed bound before diagnosis for many months, even years, and Pred has turned their lives around, given them back the ability to enjoy it almost pain free.

I'm sure in days gone by many people got through PMR because it wasn't diagnosed, but what quality of life they had we'll never know.

If it doesn't go into remission quickly (unlikely) then your blood vessels are likely to become more compromised by the offending cells in their walls making it more difficult for the blood to flow around your body bringing the necessary oxygen, energy et al to your muscles. Also you may be more liable for it to morph into GCA (not a given, but certainly a possibility). The blood vessels affected then are the major ones in your torso, and those in your head. In your torso it can/may lead to aneurysms, strokes, heart attacks; in your head it may lead to partial or full blindness. Would you refuse a tried and tested medication that stopped you having a heart attack or stroke? Would you refuse a tablet that stopped the possibility of blindness?

As I had GCA maybe my views are slightly more biased towards Pred than others. Taking them can be scary, but they have given many people their lives back after being virtually bedridden at worst, extreme pain at best pre diagnosis, and for many others with the more serious partner in crime - GCA - have saved sight.

As I said, I am biased, but, unfortunately, I do have the t-shirt to back up my opinions!

I had undiagnosed PMR/GCA for 18 months, tried all the painkillers, both OTC and prescribed, physio exercises, steroid injections in shoulders to no effect, eventually after having a blurriness for 4 days and losing sight in right eye.

On diagnosis in hospital A&E was told that there was a 50/50 chance I could lose sight in remaining eye. I took that first dose of Pred as fast as I could! Plus I had to wait another 2 weeks before it could be confirmed that my other eye was okay. The longest and scariest 2 weeks of my life. I wouldn't want anyone to go through that!

I do not intend to scare, but I do say, think very carefully before you reject Pred. Yes there are plenty of unpleasant side effects, but most can be managed. I started at 80mg and it took me 4&half years to get to zero. I did have slightly raised eye pressures and blood sugars for a few months but no extra intervention required, both returned back to normal. I did have a cataract replaced, but who’s to say I wouldn’t have anyway. I’m no madder now than I was pre Pred (but that’s not saying a lot!). My adrenals were a bit sluggish to start with, but now after being off Pred for 3 years they are completely fine.

Take care, and think about this - no drug is all good...or all bad.

[Yellowbluebell in reply to DorsetLady]

Being mad is almost a requirement on this forum!xx

[DorsetLady PMRGCAuk volunteer in reply to Yellowbluebell]

I find it’s a requirement for living! 🤦🏻‍♀️

[Yellowbluebell in reply to DorsetLady]

Oh definitely! I am known in our village for being slightly mad and i dont care!

[PMRpro Ambassador in reply to DorsetLady]

Me too!!!!

[KellyInTexas in reply to PMRpro]

Oh, please. Not mad! Just very focused! And yet she persisted!Out of a keen intellect and necessary perseverance in the case of a few auto immune diseases.

I’m still trying to learn about PMR GCA.

I’m actually trying to learn about all forms of Vasculitis. I found it very interesting that I believe it was you who said it’s micro vascular Vasculitis.

This prompted my two fold question to you a few nights ago. I’ve been in a three day migraine plus all veins swelling and bruising - it goes systemic.

I’m trying to learn all I can before I ask you more questions. ( spin you in unnecessary directions. )

I completely appreciate the risk of loosing vision. I myself am 40% impaired. ( optic nerve atrophy from clotting.)

My doctors are saying there is something running along side the lupus/ APS they are not catching. ( able to identify.) it’s very similar to PMR. But CRP is not nearly this high.

My question is... why has Rituximab not been looked at along with Methotrexate in some cases , when the numbers are so high? With GCA involvement? Or is it. Or done in the UK? To address the Vasculitis component. We are using the Rituximab “on label” for arteritis and a possible Vasculitis. This is what I’m on, plus another lady I know in West Virginia with GCA. What results are being seen if any forum members here are on Rituximab? ( I’m also on IM solumedrol every 2-3 weeks.)

[PMRpro Ambassador in reply to KellyInTexas]

Because pred is the only proven way to bring the inflammation down quickly to reduce the risk to sight, Even tocilizumab is to be used alongside pred at the start. Rituximab is used for other forms of vasculitis - but you are on a corticosteroid too. And actually, the numbers of CRP and ESR are not that significant - you can have sky-high levels in apparently not severe PMR and low levels in a patient who lights up a PET scan like a Christmas tree.

It does depend on the inflammation pathway, GCA is usually IL-6 and less often B-cells I think (don't quote me though).

[KellyInTexas in reply to PMRpro]

Just posted a pic... we are switching to IVIG. Im still not behaving on Rituximab.

Thanks for tutorials... I’m wonding how many women we may can help on my home forum that Rheumatoligists May be missing that might be so Focused on lupus/ APS that the radar might be turned off for PMR/ GCA. Especially if it actually might be happening a bit younger than 50.

This is another main reason I’m trying to learn the over all, plus nuances.

[PMRpro Ambassador in reply to KellyInTexas]

I checked - b-cells are increased in GCA but only moderately and seem to be very much in the background,altough may mediate some t-cell effects. So rituximab might work for some but not most.

[KellyInTexas in reply to PMRpro]

Ok. Yes. Thank you.

[casca312 in reply to PMRpro]

I have had GCA since August 2018 and Polymyalgia since March 2017but rheumatologist confirmed after ultra sound in August that I do not now have any GCA features.

I am now down to 5mgs from 45 and crp and sed rates were normal at last count. However could you please tell me what IL-6 and B-cells mean.

and should I be concerned about them.

[PMRpro Ambassador in reply to casca312]

IL-6 is the inflammatory substance shed by the body which is most associated with PMR and GCA. B-cells are a type of cell in the immune system.

Should YOU worry about them? Probably not, since it is the doctors who connect the type of disorder to the most appropriate drug depending on which cells mediate the effects of the illness.

[casca312 in reply to PMRpro]

Thank you for replying. I do like to know what is going on In my body!

[piglette]

Is the PMR diagnosis 100% correct? It is very unusual for Ibuprofen to help much if at all. This is a way that PMR is diagnosed as steroids are really the only thing that helps. Also given the option I would far prefer to take steroids than long term Ibuprofen. As the others say, if you do have PMR you are possibly leaving yourself open to GCA where you could lose your sight totally.

[Angela6463]

So grateful for all the replies, but depressed too! No-one thinks you can manage without preds, but I am haunted by the thoughts of my two aunts who both went blind from glaucoma. And a month ago I was diagnosed with wet macular degeneration and have had my first eye injection for that. Not a happy bunny at the mo!

I have to say this, however. My pains have lessened over the last month, and I can now do nearly all the actions I did before PMR struck. Surely this is a good thing?

[DorsetLady PMRGCAuk volunteer in reply to Angela6463]

Not a given you will have glaucoma especially on the lower doses for PMR. I started at 80mg and although my eye pressures rose a little on high doses it didn’t need any intervention and they went back to normal as I reduced Pred.

If your pains have lessened then that’s good, but it does raise the question do you actually have PMR - or maybe not in the way we recognise it on this forum. There is discussion that there are various forms - so maybe you have a lesser form. Hope so!

[Hidden in reply to Angela6463]

It's a very individual thing. I had PMR for 7 extremely painful and debilitating months before take pred for 5 months. I tapered off quickly because of gastric bleeds and am slowly improving ever since. Am I in remission? No, because I still have some pain. But I'm functional and hope to be in remission by something early next year the way things are going. Maybe my case was quick-come/quick go, or maybe it was a relatively minor case. But check with your medical experts and see how things go for _you_. Do your research, gather all the info you can, and base your decisions on how you feel and what works best for you. Wishing all the best for you!

[Tonylynn in reply to Angela6463]

My wife has has GCA for three years but also has a Macular problem. She is seen at the eye hospital on a monthly basis. It is still the dry variety but small vesicles in the retina have been identified and the consultants thought the pred was a contributory factor and were keen for her to come off the steroids. She has been pred free for about six weeks and the eyes have been relatively stable. The fatigue, on the other hand, has been absolutely DIRE but thankfully no sign of any GCA symptoms.

[marigoldb in reply to Angela6463]

From someone who is so grateful for giving my life back to near normal on pred, can I ask you did you have blood test done, if so what was your ESR..?

[Angela6463 in reply to marigoldb]

Yes, I did have a blood test; the doc told me that I have a raised level of inflammation and that it was most probably PMR. He didn't mention ESR levels. I will ask when I have my next blood test.

[Mellow-Yellow]

Gosh...before diagnosis ibuprofen had absolutely no effect on me with the indescribable pain.,what it did give me were additional gripping stomach pains and diarrhoea ! Once I had reached the right dose of Pred it was blissful.

Good Luck Angela,the help here is marvellous.

[sondya]

Prednisone - wonder drug. Stopped me from losing my eyesight. Nothing else would have done it and I wasn't going to risk serious damage with alternatives. GCA over, was off prednisone in June last year. Had to come back on it as I developed PMR. Now even that is under control (though early days) with low dose (5mg) of prednisone. If there are any twinges, I take a couple of panadol - and add a coedine if severe. (Which I have not done yet.) At this level, prednisone doesn't do much damage.

Please get definitive advice from your rheumatologist to what is going on. I'm seeing mine next week - part of the on-going care that the hospital requires.

[Gary1310]

I am not sure I would be able to function without Prednisone. I started on 20 mg. What a relief, immediately. Almost 10 months and I am down to 4 mg. I will be off it in Feb.....if all goes well. It was a blessing to be on Prednisone.....miracle drug.

[katiemills]

I agree with Dorset Lady - are you 100 per cent sure you have PMR since you seem to be responding well to ibuprofen? I was undiagnosed for months and was taking tramadol , paracetamol and ibuprofen. My husband still had to pull me out of bed and help me get dressed......

I had an accident many years ago which has lead to high pressure/ glaucoma in one eye . When I started my original dose of 30 mg prednisone the pressure did

increase and Moorfields eye hospital monitored me regularly. Now I am down to 10 mg prednisone the pressure in my eye is back to normal with my usual glaucoma medication .

I know you probably feel that you are between a rock and a hard place but if you haven't been diagnosed with glaucoma already then I would definitely take the steroids and hope that I could taper fairly quickly to a relatively low and therefore safe level . I wouldn’t risk getting GCA and other possible implications for untreated PMR inflammation. Best wishes .

[Noosat]

I am at the same level and time with disease as Gary. I had mild glaucoma before taking prednisone, and now is about the same. At the time of taking it, found it was literally a life saver. Two days ago I dropped to 3.5mg and will continue with gradual tapering. Before the medicine could barely move because of pain, but now spend about 5 days a week at the gym. No way would I take Ibuprofin because it is so dangerous for health. I take, not every day, some Tylenol for osteoarthritis.

[dillydally1]

this is my second time with pmr, I have only found prednisolone takes the pain away. x

[health51]

Hi Angela!

I had been Dx with PMR In January 2017 .

I refused steroids. I changed my diet, juicing following Joe Cross method, went to a therapeutic pool heated at 94 degré F like 4-5 times a week, drank lots of water! I am free of PMR since January 2019. It happened gradually! Also I took supplements, read Anthony William book and did take some suggested supplements. For pain, Advil 2 in Am and 2 at bedtime. I do not take Antonin meds anymore! I wish you the very best, it is not an easy ride but you can and will get better!

[animalactivist]

Yes I never took steroids and im over my pmr now

[Orpheus82]

Hi Angela. As you’re already under the care of an eye clinic the best people to talk through your concerns would be the ophthalmologists who are treating your wet AMD. We’re all different and able to cope with different levels of pain but coping with loss of vision is a very different scenario. The ophthalmologists should be able to give you advice to help you make an informed decision about steroids.

[Angela6463]

What a lot of comments, and I am touched by all the concern. I did have some blood tests and the doc said that they showed I had pmr. I do seem to have a lot less pain but am worried by all the posts warning against long term ibuprofen. Will certainly ask the eye consultant about steroids. And thanks to those who have managed without steroids - will try their methods.