Frustration

I find it hard when people say that they know someone who has been taking prednisolone for polymyalgia for 16 years with no side effects. The person involved is currently on 5mg prednisolone and her brother is on 8 mg. When I enquired why they haven’t tried to reduce to zero steroids the reply was that they are comfortable on the dose they are on. How do they know if they haven’t had any side effects ? Is it possible to be on pred such a long time without any side effects ? I have had a bit of a rocky journey until I arrived at a comfortable 7mg and find these comments difficult to understand.

[Seacat30]

As someone who has got 'The bones are osteopenic in appearance' in the comments on a recent spinal xray I wouldn't be making their choice.

[Hidden in reply to Seacat30]

Sorry to hear about the osteopenia. I hope you can get some good medical help to stop it increasing.

[PMRpro Ambassador]

I have been on pred for 13 1/2 years. At first it was prednisolone in the UK, then methyl pred in Italy and then prednisone in Italy. Methyl pred was horrible and lots of obvious adverse effects I hadn't had with prednisolone and don't have with prednisone. Overall, other than that, I would say I've had next to no side effects except bruising and thin skin while I was on IRO 18-20mg just to be able to function when my husband was dying. Now I'm on Actemra I have been able to get much lower.

Over all that time I have been monitored here, my cholesterol is a bit high but no idea if that is the pred. My Hba1c has been very good, 36 last time, so not at risk of diabetes. My BP was high - but I also have atrial fibrillation caused by the PMR not the pred so it is well controlled on that medication, running at 110/65 most of the time. I have had 4 dexascans - no sign of low bone density. I've always been overweight - I gained some, I lost it all. But I am not Cushingoid at all now.

However - your friend is silly not having tried to get lower, If she had tried she might have discovered she didn't need pred at all now. But there are people who are on 5mg or more for life - it is possible without crumbling in a heap

[Hidden in reply to PMRpro]

Hello, This is encouraging.

The lady concerned is not a friend. A family member told me about her polymyalgia and I must admit that I was a bit flummoxed as I have had problems and people often need to contact this forum, because of their very real symptoms. It was the lady’s professed lack of side effects or symptoms after her initial diagnosis and medication that puzzled me.

I am now on 7mg and would love to stay on this, as I feel well. However I know that I should try to reduce the dose at some stage. I have tried this, but it wasn’t pleasant 👀. I’m sorry about your husband, a tough time for you to get through.

[PMR2011 in reply to Hidden]

if you feel well at 7mg stick there for a bit (maybe a few weeks) so you can psychologically ready yourself for the adrenal roller coaster! And if you can take it really slow from here forward it will help adrenals wake up and lessen the bumps.

[Hidden in reply to PMR2011]

Thank you.

[Joseph14612 in reply to PMRpro]

FYI...My Actemra (going on 10th inj.) has made my cholesterol go through the roof.....now I use Repatha once a month....

[Hidden]

Just to say that I have only shared my symptoms with Health Unlocked, except for a time when I suffered from a muzzy head, weakness and headaches and had to explain this to my family, as I was not always available. As I said I feel OK now, and have not discussed polymyalgia for a long time so my family member’s opinion was unsolicited. Knowing that my polymyalgia diagnosis was mistrusted for a long time, by this family member, even though it was verified by the doctor and the rheumatologist, I usually tend not to discuss it. I did have an ultrasound after consulting the doctor, that luckily showed little or no GCA. Before PMR I was healthy except for osteo-arthritis, eczema that came out of nowhere and palpitations linked to high blood pressure. All were manageable. I have suffered from a moon face, fatigue and feeling unwell as a result of flares. Being told by this family member, unprompted, about her friend’s lack of symptoms during her 16 years of PMR, is galling rather than encouraging - especially as this family member’s medical problems have always met with sympathy and sometimes help on my part. As I have had polymyalgia since 2021 I find this refusal to drop the subject of her friend, (she has repeated it on numerous occasions), very stressing and frustrating and can only presume that she thinks that I have made the whole thing up. Has anybody else had this problem?

[PMRpro Ambassador in reply to Hidden]

It happens a lot I think - everyone knows of someone who just got on with it without problems - they claim. But I do know that one man claimed in retrospect his PMR lasts about 18 months and he had no problems at all - his wife told us it wasn't like that at all! It was about 4 years and he really struggled! And there is always a miracle cure that if only we took it ...

As MC says, she sounds quite toxic and I too would avoid her. And a little bit of me hopes she gets PMR one day ...

[Hidden in reply to PMRpro]

I wouldn’t wish PMR on her, though I have a sneaking suspicion that if it happened the whole family would never hear the last of it. 😀. Revealing to hear about the man with PMR ! Thank you.

[Sharitone in reply to Hidden]

My mother told my sister it was a nonsense my being on steroids, and I had taken to my bed because I couldn't cope (I hadn't taken to my bed). And a client of mine whom I had helped to appeal a PIP decision, had a sister who told people that her claim was fraudulent - it really wasn't, poor woman. Also, every client I ever had with fibromyalgia had their claim rejected, rudely, by the DHS. There was a programme on TV about it, where the DHS decision-makers referred to it as 'fibromyarse'. Caused a lot of hardship and suffering.

So you see, you are not alone! You have to wonder at the motivation of such people: is it some weird sort of jealousy?

Btw, my mother eventually accepted I was ill because my hair looks so awful...as she never stops telling me. I think it's kindly meant though.

[Hidden in reply to Sharitone]

I’m sorry to hear this. It’s not kind to tell you that your hair looks awful, not exactly a morale booster and it wasn’t kind to say you couldn’t cope. Treat yourself to a lovely hairdo and conditioner at your hairdresser to cheer yourself up or embark on a new venture. Stress, when you have polymyalgia, is the last thing you need. It’s difficult to avoid toxic people, but preferable, to keep the stress levels down it seems.

Share your ideas with people who care about you, your Mother doesn’t seem to be the one to boost your morale. You sound sympathetic and sensitive, this should be appreciated and encouraged. 😀

Have read your profile and have just found that you have suffered from hair loss. This should be treated by the doctor, you can have injections for it, also the B vitamins, especially B6 can help. Try to avoid stress as this can affect the condition of your hair.. It’s good that you seem to have found out the cause of your hair loss. Your Mother may have been speaking out of concern, but it wasn’t helpful. I lost some of my hair, but it grew back, yours may have started to grow back by now. My problem didn’t reoccur. I was in France years ago and had injections of B6. I never did know what caused the hair loss. I know someone who is receiving NHS injections for the problem. I hope my rather ham handed message helps in some way. 😀

Thank you for your kind reply and sharing similar worries with me. I was feeling very stressed, but am now feeling better thanks to you and the other kind people who have answered my messages. There are, as demonstrated by this forum, plenty of caring people in the world.

[MiloCollie]

she sounds quite toxic. How she makes you feel is a worry. I would cut down contact with her to very very minimal. Coping with difficult people is stressful. Us PMR people don’t need that. Even if we ARE making it up 😜😂

[Hidden in reply to MiloCollie]

Thanks for that. My husband agreed with you. I liked the cheerful note at the end 😀

[autumnlass in reply to MiloCollie]

I agree with MiloCollie! My late mother would have been just the same. 😕. Devaluing your looks when you are ill and vulnerable. If you can, go for a new hairstyle and take Folic Acid.. Vitamin B9. It’s helped my hair a lot since being on MTX. 💐

[pegpowell]

I had a friend who said I was lying about being ill with PMR because at times she saw me walking normally. I did not speak to her for years. We are now though. I was shocked and disappointed as I had admired her as a yoga instructor.

[Hidden in reply to pegpowell]

Hello there,

Yes, the reaction to PMR is quite strange. People still don’t understand it and, because of this, sometimes react aggressively, Either pretending they know how to treat it or, it seems, just presuming the person is making it up. Not kind. Sometimes a slightly moon face can also make you look very healthy (the Botox effect) when you are not, which doesn’t help. There is more information on-line, but lots of people still haven’t heard of PMR. I must admit I hadn’t until I got it. I hope your friend has seen the error of her ways !

[yogabonnie in reply to pegpowell]

As a Yoga teacher with PMR Boo to her. thank goodness for YOU tUBe and lots of free non judgmental yoga classes!!!!

[pegpowell in reply to yogabonnie]

She was also my friend which made it worse.

[yogabonnie in reply to pegpowell]

Oh, I'm sorry, I didn't realize she was a friend too. That does make it harder. So many people don't understand what this disease is. I usually say it's a painful autoimmune disease you can't see but I'm often exhausted and you'll notice that when I lie down in the street. (ha!) I sometimes tell people aobut the SPOON THEORY which I think is the best way of explaining and now I have people call and ask if I have enough Spoons to do something! If you haven't heard that I think it is in the FAQs!

[DorsetLady PMRGCAuk volunteer in reply to yogabonnie]

yes it is! Takes a bit of finding so have linked here for  pegpowell

rarainbow.wordpress.com/201...

[Meggsy]

My DIL told me she knew two ladies who had been on prednisone and they agreed the only way to get off it is to just stop taking it and I should just try that. I asked what condition they had and she didn’t know. I just raised my eyebrows and said “Mmm”.

[Hidden in reply to Meggsy]

Well you can’t help but laugh at some people. Thanks for that. 😀

[KASHMIRI1]

I don't think you would know if you can get on to a lower dose of pred if you don't try. Saying that l would be happy to stay on a low dose of pred forever rather than feel as ill as l did before my GCA diagnosis. However l am very happy to continue reducing as my three year pred journey has been interesting to say the least. I have had nearly every side effect on the sheet sent with the meds. I have had hallucinations, dinner plates that l know are round would go oval, the cooker and basin in the bathroom would suddenly tilt away and the perspective would change. I heard voices, bells, sirens, my alarm system and buzzing. I had skin problems and virus's, racing heart, a problem on one lung, mood changes etc etc etc. On 7mg at the moment and due next week to go to 6mg fingers crossed for a not to rocky road.

[Hidden in reply to KASHMIRI1]

Hello,

Well, my goodness, it would be funny if it wasn’t so awful. I’m thinking of the dinner plates, not the heart, lung, skin problems etc.

I’m sorry that you have had such a bad time and I sincerely hope that you can now reduce safely. As your steroid is having such bad effects is there any hope of your doctor transferring you to an alternative medication ? As you are speaking of your problems in the past tense, maybe this has now been tried and all will be well. I hope so. 😀

I tend to just get a muzzy, achey head, dizziness and fatigue on the lower doses, but I will try to reduce from 7mg to 6mg eventually. Compared to your troubles it’s a drop in the ocean 👀. Here’s wishing you better health in the future.

[KASHMIRI1 in reply to Hidden]

Thank you for your reply, yes have another drug called methotrexate that l have been taking for a few months now as well. I think is helping a lot with the reduction.

[Hidden in reply to KASHMIRI1]

Hello Kashmiri,

Thank goodness for that. You have had such a hard time and have dealt with it all very courageously. Unluckily, some people are particularly susceptible to medication and your reaction to them was serious. The hallucinations must have been extremely frightening, though interesting, and I’m sorry that you have had to go through all that. I’ve only had one hallucination that involved my husband, giant size, yelling and shouting at me from a dark corner of our bedroom, whereas the poor lamb was cosily tucked up in bed , 😀Hope all goes well with you now.

[KASHMIRI1 in reply to Hidden]

Thank you for your kind words.

[Hidden in reply to KASHMIRI1]

👍