wimped out again...found another excuse

[Rue9]

This is me thinking out loud. if you find it annoying, I'm sorry, but fully understand. Further to my utter skunner of pred, even at 15mgs following PMR diagnosis , I have today taken another rain check. This time deciding to speak to the GP Thursday. She will not be pleased.

The white faced terror of this med, may be caused by the fact that I already have severe panic attacks. light sensitivity and mood swings. I am vain, but know that the weight gain (55k at present) can be shed, WHEN they let me off, if they ever do. Growing a beard may conceal the other things, but I'd rather not. Cataracts, (already forming) glaucoma and bone thinning, I'm not, like everyone here with PMR, not so keen on.

In these moments I begin to lose faith. The GP has not referred me to a rheumatologist, and not done the crp test. This kind of irrational criticism will only get worse on the meds.

Perhaps I am tuning in to a mythology of steroids, and I should get a grip. Swallow my fear, or something like.

[DorsetLady PMRGCAuk volunteer]

Hi

Looking at your previous post I see you have been given 3 weeks worth of medication. Is that still correct?

If so, then you have to bite the bulletin and try it. It is not going to trigger all the side effects you are worrying about - that happens on longer term use. Try it for a week initially, and see if it helps your symptoms, if it doesn’t, then don’t take any more - you probably haven’t got PMR.

If it does help, then you’ve got to really think about the future because it probably means you do have PMR, and Pred is the only drug that is going to help.

If that’s the case then you need to get help from your GP to help with your fears - whether they are rational or irrational it’s matters not - you do need help to overcome them.

[Rue9 in reply to DorsetLady]

Thank you, Dorset lady. I feel that you’re correct in your appraisal. Thank you for taking the time. Best to you. Rue

[Blearyeyed in reply to Rue9]

Totally agree with Dorset Lady , in fact I would even give it two weeks.

Worrying about the side effects won't help the pain you are already in , and you won't know until you try it.

Believe it or not , whichever country you live in , Doctors do not prescribe steroids lightly , they don't hand them out like Dolly Mixtures , they do need to believe that they will be of real benefit to you when they do.

All of the side effects of steroids are not suffered by everyone , and the few that you may have can either be limited by changes in diet and lifestyle or monitored so that the medication can be changed for other options in the future if you have a real intolerance to them or they are having a detrimental effect causing other health issues.

Allowing yourself the attempt is better than allowing your condition to worsen without taking the advice you have been given.

I advice that if you make sure you try the drugs and get to the GP and request politely but firmly to get a Rheumy appointment , if you have tried and had no relief from steroids , or tried them and continued the medication because it is helping you , all of that evidence will be important for the Rheumy to hear in their evaluation on what to do next.

But it is totally your decision at the end of the day , you have to do what feels right for you , hopefully our thoughts will help you , best wishes with your choice , Bee

[SnazzyD]

Hello, have you had Pred before and had a bad experience? You’re not the only person on this forum who has been in a flat panic about Pred, I was the same when I started on 60mg for GCA. I think the anticipation is worse than the actual thing because all the scenarios in your mind right now are all at the worst level of outcome for everything. The reality is more mundane. Yes, I’m getting cataracts at 56 but they can be fixed and thinner bones from previously but that can be counteracted too. I didn’t put on any weight due to diet control (carbs and salt and not starvation!) and my hair growth was massively reduced once I got to 10mg. It’s good your start is already around this figure. I know I’m not you, but if it was me, I go for the trial for the reasons DL has said. At least it’s a trial and you can stop just like that after 3 weeks. Now, if it works wonders it’ll make your life better and it’ll be preventing damage occurring and possibly resulting in GCA. Interestingly before diagnosis I had terrible light sensitivity, motion sickness and cyclical neutropaenia, all of which have gone or improved since Pred, interesting.

[Rue9 in reply to SnazzyD]

Hi, SnazzyD. niot had pred before. Do suffer catastophist imaginarve tendencies! but gp did moot poss long term if responded. Am 67 this year, and glaucoma in family. I had impression it was dangerous to stop abruptly. I’ll try hardest to gain courage. What do they say, a coward dies a thousand deaths, a brave man/woman dies but one. Who knows, i may even become sane! Xx

[PMRpro Ambassador in reply to Rue9]

You can stop quickly in the first month or so. I had 2 weeks each of 15/10/5 mg and stopped. Miracle in under 6 hours with 15mg, pain back in 6 hours after missing the first 5mg tablet.

[PMRpro Ambassador]

Understandable - fully see where you are coming from. It's a hard choice as pred is the only thing that manages the pain of PMR. And I know all about that after doing it for 5 years with no pred. You can ease the discomfort some, you can't get rid of it.

I have nothing much to add to DL and Snazzy's comments - except to remind you that unmanaged PMR is 7 times more likely to progress to GCA than when it is managed with pred. And if you develop GCA you will have the choice of immediate use of pred at a high dose or risk irreversible loss of sight.

[Rue9 in reply to PMRpro]

Thanks for that PMRpro. Sorry to hear of your pain over 5 years. How are you now? I

I do take on board all you say about leaving the condition untreated.

As a matter of interest, are pharmas trying to find an alternative to steroids. My cynical mind wonders as pred is relatively inexpensive to produce, there is no real motvation to explore other trials. i hope i’m wrong, but that is just how my suspicious mind works. Of course, as the tests for PMR iare not an exact( as i understand it) perhaps the treatment can’t absolutely spot n, either.

All the best. Rue

[SnazzyD in reply to Rue9]

The trouble is whenever any drug monkeys around with the immune system there are going to be drawbacks. Given a choice I’d much rather have Pred than some other fancier newer drugs, because the side effects are easier to control. Also Pred has been around for donkeys’ years and is a known quantity whereas the newer ones haven’t. Plus, the other thing to consider, you are not on that dose long term, it does reduce. Below 5mg is less than what you produce naturally anyway and for many under 5mg is all that is needed and for most PMR burns itself out eventually.

[PMRpro Ambassador in reply to Rue9]

As long as I have taken enough pred I'm fine!

Not really a lot for me to add to Snazzy again - pred is old but it is familiar with well known effects. There is next to nothing to learn about it. It doesn't treat PMR - it manages the effects to allow a decent quality of life. Anything new has nothing to show what will happen in years to come to patients who have used it. Actemra/tocilizumab has a role to play in GCA but given the potential risks it may have, I'm sceptical about its use in PMR which is mostly self-limiting and is usually over in a few years requiring relatively low doses of pred.

Autoimmune disease is a conundrum - it is always due to a deranged immune system. So any treatment options will be aimed at the immune system. And that has some very serious potential long term effects. Many rheumies favour using additional immunosuppressant drugs alongside pred, such as methotrexate. However - immunologists are concerned that such extra use of immunosuppression may store up problems. Not the least is that the prolonged immunosuppression may increase the risk of cancers developing down the line.

The long term effects of new drugs usually start to peep over the parapet in 7 to 10 years - class actions in the USA for tocilizumab are just appearing. Not that it is "bad" (yet) - in this case it is because the company "forgot" to mention that it had the same cardiovascular effects as its peers who did talk about them. The perception was tcz was somehow "better" rather than just the same. The next may well be the new generation of anticoagulant therapies - the ones that don't require monitoring, according to their manufacturers. Except they do - the incidence of severe and even catastrophic bleeding is notable. But to insist they are monitored spoils the company's USP. It is only a matter of time before someone cottons on to the fact and shouts it from the rooftops.

Biologics are the future we are told - but what are they going to do as they interfere in the biology of our body? It could be a nasty surprise for some.

[Rue9 in reply to PMRpro]

Thank you for such a thoughtful and informative reply. I can see longevity of the drug, v newbies, whose downsides are yet to manifest would be preferable. Interesting you mention the haywire nature of PMR. Almost as if it mirrors something like a trauma. Anyway, thanks for that.

All the v best. Rue

[Blearyeyed in reply to PMRpro]

Trying not to think about it as the way things are going the TOC or biologics may be my only choice very soon !

And yet still , when you get to a certain point with pain , loss of ability and independence and insufferable insomnia you are willing to try anything , no matter what the side effects , I would raindance like a cat on hot tiles wearing a banana suit if it would help at the moment.

It's all subjective isn't it ? hugs from your friendly , dancing banana , bee xx

[PMRpro Ambassador in reply to Blearyeyed]

Oh - I don't have ANY objection to the use of the biologics once you get to them on the list. But it is crazy to use sledgehammers when there is a lighterweight item in the toolbox that you KNOW will do the job because it has been used for ages. At some point it won't - and then you scale up the approach. I don't approve of Big Pharma using the patient, who is not being monitored as closely as the clinical trials subject was, to complete their research. It would be more acceptable if they didn't sing the praises of the new stuff without equal mention of what needs to be ironed out. The selective publishing of data is not good enough.

[Blearyeyed in reply to PMRpro]

Totally agree , I wouldn't go on them unless I really have too , unfortunately as the extra syndromes are diagnosed I will not have a choice.

I think because of the clinic I am being introduced to it from , they are still in clinical trials for Behcets , so at least I will have the added bonus of more monitoring if it isn't going well via that study which will be a relief.

But any relief will do right now really , big hugs and hope you are beginning to feel a little better now , and the OH is slowly improving too , do send him love from a random stranger he has never met , and my best wishes for his recovery. You need regular trips to the ice cream shop! 😋😁😂😂 xx

[PMRpro Ambassador in reply to Blearyeyed]

He keeps shifting the icecream shop trips - he is really mean!!!

[Blearyeyed in reply to PMRpro]

Better get that ice cream maker out.

I am having a belated pancake Day treat tonight , as my frying pan suffered an injury yesterday and no amount of Pred could fix it😋😁😂😂😂

Hugs , bee x

[PMRpro Ambassador in reply to Blearyeyed]

I should have refused to do pancakes yesterday - that would have served him right ...

[Soraya_PMR]

What’s your pain and disability level?

[Rue9 in reply to Soraya_PMR]

Hello. Thanks for asking. Hope you’re okay.

I’d say, 2 to 3 pain at the mo. Has been 7 to 8 november. But still got out. Difficulty standing fromsedentary in the past, but lessening. Did some excercises they helped. Knees are dodgy, almost sciatica. Pain shoulder like rotary cuff, had a tear. My ersed is 37 serum alb 33, and 103 haemo. Thats why they suggestd PMR. Up and down, I’d say, worse after standing.

[Soraya_PMR in reply to Rue9]

I can see your dilemma if you’re now feeling ‘better’ than you did 4-5 months ago.

I recall my pains possibly starting in the April, at least I had minor infections (ear, throat with enlarged glands.) I almost imperceptibly went down hill. Friends asked me what I’d been up to, and the answer was ‘nothing’ I had a goodly dose of lazy-itis! I tried Body Balance at the gym during December and came away with a new unresolving symptom each time (arms, thighs, what felt like my diaphragm) and then Christmas Eve rib pains moving from side to front. In February I had what I can only describe as a ‘flu with gritty joints, couldn’t bear to sit still, couldn’t walk hardly. The gritty joints kind of resolved but I was struggling up stairs, having difficulty moving, all the typical symptoms. By the time I saw GP in April I’d had enough, and despite ‘normal’ ESR and CRP, I persuaded him to let me try pred, and 20mg and 6 hours later I was like a spring chicken! In a round about way, I’m suggesting you maybe haven’t reached desperation point yet? When you’ll grab the pred with both hands and scream THANK YOU!!!

Have you had your vit D levels checked? Thyroid?

[Rue9 in reply to Soraya_PMR]

Thanks, Soraya-PMR. You are right, not n that state as yet. I was almost, but it changed.

If you’ve no raised ers or crp, could it be fybroyalgia? Although if it respnds to pred, then unlikely. My GP didn't offer crp, and not referred me to rheumatologis, either. But then the surgery is in an affluent borough, and they are tight. Getting support for depression is virtually impossible.

My son has CFS, i wonder of there is anty genetic link to these conditions.

I managed to get a 50000 iud for six weeks from the gp, that was a miracle. No thyroid probs.

All the very best. Rue

[Soraya_PMR in reply to Rue9]

Do you think the high dose vit D might have helped? I guess your levels were low if he agreed to prescribe.

No I don’t have fibromyalgia. Thanks for the offer 🤣 but no thanks! I’m one of 20% who don’t get inflammatory markers, we’re often in the younger age group it appears. And my reaction to pred (from 90 year old to young and sprightly 56 year old) in hours wouldn’t have happened with fibro. I was referred to rheumi because I’m atypical (no inflammatory markers and too young for my GP’s liking 😉) and she’s pondered over all sorts of differential diagnoses and I’ve had multiple scans, but the one thing she’s not suggested, ever, is fibro.

I hope you continue to improve, but if you need pred, you need pred, and that’s all there is too it really. If you read the drug inserts in any drug, prescribed and over the counter, you could scare the pants off yourself! I remember my first dose of pred, I warned my son to keep an eye on me. Not sure what I thought would happen! But after those few hours, I couldn’t wait to take the next dose. I remember bouncing out of the bed next morning, and taking the dogs on a lovely walk before 8am! They were a little surprised too 😮

[SheffieldJane]

You vent away Rue9. It is no small thing. You are informed. Btw I had light sensitivity with PMR that went after treatment, no cataracts, 2 good Dexas in 3 years. Mood swings are not so much swings as irritability and sometimes low moods. Weight gain, mainly because I am an undisciplined greedy 🐖.

Panic attacks are horrible. I had them in the 80’s it turned out to be the forerunner of Thyrotoxicosis. Nothing I have experienced on Prednisalone has been anything like them, but I did feel a bit overwrought initially.

Keep your own counsel and keep well. X

[Louisepenygraig]

The best thing you can do is bite the bullet and try them. If you do have PMR relief should be very quick. If they don't work you probably don't have PMR and then you can stop. Response to steroids is one of the ways doctors test for PMR I've not really had any problems with pred at all. On 15 it not only gave me relief from my pain but gave me a bit more energy and got rid of my migraines. Now I'm on 10 my migraines are coming back. I haven't put on weight or developed a moon face either. Everybody reacts differently, you may be one of the lucky ones, if you don't try you won't know

[MhairiP]

Like you, I had a terror of pred when I was diagnosed last summer, but when I started it, I realised it wasn't as bad as I expected! My pain & stiffness disappeared, I was able to go about my normal life, and the pred side effects were negligible for me. I reduced carbs so didn't gain weight (in fact I lost some). I made sure I exercised as much as I could - pushing myself very gently but not overdoing it (by 'exercise' I just mean walking - nothing strenuous!).

As others have suggested here, give pred a go. Try it for a week or so and if it doesn't suit you, you can stop it. You won't know until you've tried! Please keep us posted.

[Rue9 in reply to MhairiP]

Will do! Xx