Side effects of Pred or tapering

[Pirnilla]

I started on 30 mg in dec now down to 10, tapering 2,5 mg every other week as my reumy sais I am too young for PMR and wants me off Pred asap.

I find that this quicker tapering gives me strange kind of pain, coming and going away, burning muscles and muscle weakness but only on the left side.

Other wise I haven't noticed so much of typical side effects more than slight insomnia. I have adjusted to anti-inflam diet and I think it helps with side effects.

Of course I hope that my reumy is right but I am worried that this fast tapering is gonna be tough....

[SheffieldJane]

How old are you Pirnilla?

How were you diagnosedin the first place - on what basis?

It doesn’t matter what reason you were on Prednisone, you still need to taper off them gradually, no more than 10%of your dose at a time.

What does your Rheumatologist think is causing your symptoms?

2.5 mgs every other week is too fast, a month.

My post keeps disappearing. I will try a new one.

[Pirnilla in reply to SheffieldJane]

I am 47. I was diagnosed with severe pain and stiffness in neck and shoulders, back of my legs and lower back. Raised CPR. Two GPs diagnosed me.

My reumy just said that due to my age it can't be PMR. He didn't have any other suggestions. I have been checked in all other ways, bloods, x-ray of intestimens and lung, gynecological ultrasound.

He sais that when I am off Pred they can start a new round of investigations. I have been totally pain free on Pred from 12 hours after taking my first pills.

[DorsetLady PMRGCAuk volunteer in reply to Pirnilla]

Actually, it can be PMR, It’s unlikely maybe, but not impossible. But I doubt if he’s going to change his mind.

I’m afraid if you continue to regime he’s given you, then it is going to be brutal, and very painful. But to get an answer as to what it is, it may be the only way!

You have a couple of choices really, either do what he wants, and as quickly as possible, so further tests can be done, sooner rather than later, or

See another Rheumy and get a second opinion.

Sorry if that sounds harsh, it’s not meant to be. Many of us, myself included, had months even years of not being diagnosed so we do appreciate what you are going through, and I do hope you get a definitive answer soon.

[Pirnilla in reply to DorsetLady]

I am sticking to his plan until it is unbearable for me, showing he was wrong. OR, maybe I will be fine. I have a fraction of hope.

I will keep you updated.

[DorsetLady PMRGCAuk volunteer in reply to Pirnilla]

Please do.

I suspect he may be proved wrong, but unfortunately it’s you that has to suffer ...not him!

[jinasc]

Well my post keeps disappearing as well. I have sent you a PM instead.

[SheffieldJane]

Tapering down by 1 mg per month, until you reach 10 mgs then reduce by 0.5 per month. I am not surprised that you are in pain. This is a continuation of my last response to you, my text kept disappearing.

I should have asked you how long you have been on Pred. ?

[Pirnilla in reply to SheffieldJane]

Since mid December -17.

[SheffieldJane]

You are on the young side for PMR but it certainly isn’t unheard of. I fear that you will be back to square one when you get down to zero Pred and possibly feeling worse. The inflammation will be measurable again which is what the Rheumatologist must be aiming for. Has he given you any clue as to what he thinks is the matter with you?

I can see why 2 GPs concluded that it was PMR in spite of your being under 50. I fear that they might be right and that all this suffering will be for nothing. It seems to be a cruel way to diagnose you. I am glad that you are having a raft of tests to discount other things. You need to report your symptoms to him. I am so sorry for you.

[Pirnilla in reply to SheffieldJane]

He examined me, trying all kinds of position detecting artose and similar I think. No signs of anything strange. No other genetics saying anything else. My grandmother had TA I found out yesterday.

You are right, I need to report my pain to my reumy. Thank you for your support!

[SheffieldJane in reply to Pirnilla]

What is artose?

[Pirnilla in reply to SheffieldJane]

Sorry for my swenglish translation! It is osteoarthtritis.

[Hidden in reply to Pirnilla]

I think if the pain becomes unbearable you should stop i.e. increase and call the rheumy. Do you know what age you grandmother showed symptoms of TA/GCA? The fact she had it is important. As for your age. I have worked back to when I think I had first symptoms and I was @5years ago but was dx 2 years ago. I would have been 51 to 52. There are lots of people on here who are in their 50s. 48 isn't far off (Sorry!! ) and as someone said the other day a illness doesn't know your age (in general).

Your swenglish is much better than my engdish😁

[Pirnilla in reply to Hidden]

I thought the same, 50 isn't so far away actually.

I asked my mother and she thinks my granny was somewhere around 55 getting TA.

I know from social media groups that there are quite a lot of people in the 40s with PMR. Maybe my reumy isn't up to date....

[Hidden in reply to Pirnilla]

It was @insight329 who kindly collated a list.

If you go the insight329 profile page it's a few posts down.

[Hidden in reply to Pirnilla]

Sorry pirnilla...forgot how to link to a post for a minute..

healthunlocked.com/pmrgcauk...

[SheffieldJane in reply to Pirnilla]

You put us Brits to shame with your bilingual abilities. I feel worried that your grandmother had TA as it is on the same spectrum as PMR but the consequences are potentially life changing with the risk of loss of sight. It is imperative that you get a correct diagnosis. Usually your immediate positive response to Prednisalone would be enough evidence for diagnosis. If you experience headaches, jaw pain and or any visual symptoms, go straight to a hospital emergency room. The only way to safeguard your sight with TA or GCA is a high dose infusion of Prednisalone. I agree with the others, a second opinion seems urgently indicated. You don’t get second chances with TA.

[SheffieldJane]

Good luck! It may be RA he’s looking for but mention the hereditary factor.

[Pirnilla in reply to SheffieldJane]

But I do not have that special gene for RA.

[Pirnilla in reply to Pirnilla]

They tested me but didn't find the HLA-B27.

[SheffieldJane in reply to Pirnilla]

Well that’s something else to cross off the list. I do think your doctors ought to be extra vigilant with you because your grandmother had Temporal Arteritis though, that’s the main thing, I think.

[Pirnilla in reply to SheffieldJane]

TA and PMR are related but does it mean that the risk for me is bigger to get TA just because she had TA. Do you understand my question? That I got PMR is of course for sure due to genetics, but is the risk that I get TA bigger aswell because she had it?

[SheffieldJane in reply to Pirnilla]

As far as I am aware there can be a genetic predisposition to getting GCA.

PMRPro probably knows a lot more of the science.

[PMRpro Ambassador in reply to SheffieldJane]

People with a Scandinavian heritage are said to be more likely to develop it. Maybe - I'm not entirely convinced.

There may be a genetic predisposition - but there are so many different factors that may (or may not) have a genetic bias that you can't identify one above others. There can be genetic tendencies - but there may be multiple ones and then they need a trigger, environmental, infectious, trauma, blah blah blah in order for them to be switched on.

I've been reading a book about genetics/genes/the genome etc which has a fantastic chapter about this and I did wish this afternoon I could copy and paste it into a post. It explained it so well

[PMRpro Ambassador in reply to Pirnilla]

"That I got PMR is of course for sure due to genetics"

Not necessarily at all - it is a very complicated, vague and wide ranging genetic link as I said in the other post. There may be dozens of different factors which all have to link up and then have a trigger to switch them on on top of that. The individual factors may be present - but nothing flicks the switch.

For myself, I believe all autoimmune disorders are just a point on a long continuum - which label you get depends on what the symptoms apparently add up to. Which accounts for why even within one "illness label" individual patients differ greatly. And this is starting to be mainstream thought too.

[PMRpro Ambassador]

I think 2.5mg every other week from 7.5mg may be VERY hard as you have been on pred long enough for your adrenal function to be lowered. But it may be fine - it is a fairly normal sort of reduction when people haven't been on pred long.

This isn't tapering by the way - that's where the 10% advice applies. This is reduction, getting to zero come what may.

Your rheumy is wrong - it is unusual but not impossible to have PMR in your 40s. But he is right in that he can't see what is going on while you are on pred - but what conclusion he comes to once you are off pred is another matter. People arrive here on the forum on a regular basis with the same problem - GP thinks PMR and treats. rheumy feels his nose is out of joint because he is the expert. If it really is PMR - the only medication that will help significantly is pred. And it did.

Do let us know what happens. And is a second opinion with a less blinkered rheumy an option? I don't know much about your system. But you would think that in Sweden he might have seen younger patients in the past - you have one of the higher rates of PMR!

[Pirnilla]

The thing is that this reumy id retiring before I get back for the next visit so then I will meet another reumy anyhow. The plan is to go back for bloods every 4th week (next) and then meet a reumy in June when I am off Pred. I think I will have to contact them earlier though if reducing this fast is too hard or the pain comes back. I think either of it or both certainly will happen.

[SheffieldJane]

You are not a box to be ticked. Your PMR will take as long as it takes. Big drops in dose will make flare more likely, then you may find yourself back at the beginning. I hope the new Rheumatologist proves to be wonderful.

[Pirnilla]

Thank you for all your informative replies! I asked my GP what to do after my visit with the reumy and didn’t dare to say something else. He said:-He may be right. And considering the super fast tapering, he said I might be fine.... probably not.... He also said that the reumy is the expert on these things.

I feel like being in some sort of experiment.

[PMRpro Ambassador in reply to Pirnilla]

"He also said that the reumy is the expert on these things."

He thinks does he? I've heard enough stories in 9 years to make me feel that can be a questionable attitude with PMR. But there we are.

The person who is most expert on your body is YOU - and the doctors need to bear that in mind.

[Pirnilla in reply to PMRpro]

I often feel that the ones with most information about PMR is the patients, not the so called educated experts. We are curious people who want and need to know everything about our condition.

I doubt that my expert, my reumy is right this time, I think I have PMR and that it will show when I get lower in dosage. Right now I am just fine, being able to live a perfectly normal lite mostly. Without carbs, sugar, too much salt and too much red meat though.