Hair-loss and other side effects

[Laopdr]

Hello, This is my first input to this very helpful forum!

I live in Switzerland but find your information so useful to complement what I read and what my rhemo tells me.

I have been on Prednisone for 13 months for PMR. After 11 months I felt so frustrated with the side effects like moon-face, up-and-down mood, so I decided to reduce the dose from 15mg to 0, over a three months period. The result was of course pain coming back and I lost 75 % of my already so thin hair. The pains have since been reduced a lot.

I then had a blood test and it shows no inflammation or infection. All is good. So my first question is: If the blood test if fine, can it mean that the PMR has been cured?

I feel so miserable with the hair loss, so my second question is, will it grow again? ( I am 70 years old) ( My dermatologist is very vague).

Also my rhemo, as I said I still have pain in the hips, he told be to restart the treatment for three months on 5mg. I have not done so..

Thank you in advance for your kind and so helpful advice!

[SnazzyD]

Hello and welcome. Were your inflammatory markers raised before diagnosis? 20% of us never have any raised inflammation markers but those who do can use it as a guide to disease activity. However, the response can be delayed, therefore symptoms rule so the fact that you have pain means it is not cured. Steorids are not a cure but a protection from damage due to your body producing inflammation while the immune system attacks the wrong things.

Hair loss is common but not necessarily always due to steroids. It is common for hair loss to occur as a delayed effect of major systemic illness. It usually grows back too. Mine fell out twice over the course of three years and I think in both cases it was due to the illness stress. It’s ok now.

I understand your dislike of the steroids but by avoiding them, you risk the PMR developing into GCA which can cause blindness and stroke. It also, requires high doses Eg. 60mg. I had GCA so know which dosing I’d choose.

[Jampad]

I have GCA and it has taken me ten months to taper from 60 mg of steroids to 12..5. My hair started falling out a couple of months ago. I have had lots of side effects from the steroids but this is the one that has upset me the most. I really hope it starts to grow back.

[jinasc in reply to Jampad]

Folic Acid for hair loss.............just helps - check it is compatible with all medications you are taking.

[SheffieldJane]

Hello and welcome to the site. I understand your frustration with the side effects of steroids. I have had PMR for 4 years and it has just morphed into GCA with the frightening prospect of sight loss. Please safeguard your eyes Laopdr. I was on 3 mgs of Pred when this happened and thought that I had been very cautious.

My hair had grown back in curls ( which I liked) and my swollen face had normalised. I expect this to happen again. My hairdresser was clever and helpful and I found Kevin Murphy products give the illusion of volume and are completely natural ( other products are available). Once she is operational again, I want Laura to give me another clever cut. I have bought some pretty hairbands to cheer me up.

If I had stopped Pred in the way you did I don’t think I would be mobile now. I could barely get out of bed. Symptoms rule with PMR. I have never relied on blood test results, until now. Wishing you a gentle ride. I know it’s hard.

[PMRpro Ambassador]

As has been said, 1 in 5 of us have blood tests that appear normal - but they may not be normal for us. "Normal range" covers the results you would find across 95% of the entire healthy population - and for ESR, for example, that ranges from 1 to 20 or even 30 depending on the lab. But my personal normal is in low single figures, 4-7 at most. If it reaches 16-18 it is very raised for me, but still is within normal range so many healthcare professional would tell me it is normal.

Sometimes the increase in the blood markers is very delayed for some reason - I know people who had symptoms of PMR or GCA but were told the markers were fine. Only 6 months later did they rise.

One possible reason for your hair loss is that you reduced your pred dose so quickly to zero and your adrenal glands didn't have time to recover and start to produce cortisol again - while you take more than about 10mg pred for more than a few months they don't need to add to that, it is plenty for the body to function. Once you reduce the dose again they have to start to wake up and top up the artificial dose you are taking. That return of function doesn't happen overnight - it can take months, even after stopping pred altogether it may be up to a year before everything gets back to normal. The slower you reduce from 5mg, the less likely you are to have problems.

[Laopdr in reply to PMRpro]

Thank you for your your very helpful and detailed reply! Yes, I realise that I reduced the dose too fast, especially after I was down to 5 mg. (Next time I will be more careful, that is if I have to go back to Pred). Strangely, I have no pain these days , but I fear the flares.

I am seeing another Rhemy soon and will ask him about GCA and its relevance for me. Thank you for highlighting this.

As a general remark on this forum, I want to share how I found it difficult to accept that doctors do not inform you well about PMR when one is diagnosed. Is it only me who has that experience? I had to do a search myself and as I mentioned characteristics of PMR the doctor would nod and say a bit around that. No mentioning of side effects for Pred. either.

[PMRpro Ambassador in reply to Laopdr]

Your reply to me will probably not be seen by many, that is the rather strange nature of this forum. But I can assure you on their behalf that almost everyone here had a similar experience with regard to doctors not informing them about PMR and the use of pred. There is a very simple reason for that: they don't know - half the time they struggle to recognise it, never mind help the patient live with it! I have close contacts with 2 rheumies who are world names in the field - both have learned about PMR because of knowing me and the knowledge we have gleaned over the years through the charity working with so many patients. We know that it is possible to mitigate many of the adverse effects of pred when you know how, and even avoid some altogether - doctors just assume all adverse effects are inevitable. They are not.

[Dambusters]

I am so sorry to hear about your hair loss. Mine thickened BUT I also got facial hair

I am now taking 15mg. , having been down to 9 but had a flare up.

[DorsetLady PMRGCAuk volunteer]

Hi,

Hair loss will return, but as jinasc says take Folic Acid. Much cheaper and more successful than other potions. Plus is more likely to have been caused by your ill health than the Pred, which people always blame.

Have a look on line and see ideas for camouflaging your hair with scarves etc whilst its out of condition -- and when we can get back to the hairdressers in safety discuss with yours - they good ones are magicians at making the best of what you have.

This is a start -

google.com/search?q=videos+...

[yogabonnie]

Hi. I doubt the PMR is gone if you have pain. I think that was too fast. Patient is the WORD with PMR. As to the hair loss I lost a GREAT DEAL of hair, but after I got under 5mg. (2 years lager) it started coming back and was very thick by the time I got to 2mg. but then the pain came back and I am back to 7mg. A little stress in in the world perhaps has triggered it!!! #blacklivesmatter

[Laopdr]

Oh yes, patience is the word. Thank you for reminding me. Will see a new Rheumy this week and will ask his opinion and also about the blood test results that er great.

This si an amazing group!

[Artsister]

I kept telling my rheumatologist that my hip hurt— she dismissed it as bursitis.

But it wasn’t — another side effect do prednisone I didn’t know about is avascular necrosis — prednisone cut off the blood supply to my hip. It was very painful and destroyed the hip bone resulting in hip replacement — much to my disappointment.

I wish you better luck.

[Laopdr in reply to Artsister]

So sorry to read this. When we need patience for PRM we also need patience with our medical support.

[Paperroses]

I lost a lot of hair in November and its growing back . Im almost 71. Its coming in curly and white and I had straight dark hair before. Im happy its growing. Im on 8.5 mg pred.