GCA and hair loss

[Groda]

Have been on pred now since end of July 2023 - originally 60mg now tapered to 20mg. (stay on 20mg for 2 weeks).

Feel fine on that dose. Will taper to 18 mg in a week Mon. and stay on it for 2 weeks, etc. then down by l0% every 2 weeks if all holds.

I am losing my hair. Will taking folic acid help? What about marine collagen? How long before my moon face, double chin, dowager hump and protruding abdomen start to go down? Also have dry eyes, which I take drops for.

On another note there are so many references to short forms of medications, diseases, etc. that I mostly do not know. e.g. MTX, LVV, TCZ, etc. It would be so helpful if someone could give me a list of those short forms and what they stand for. Thank you so much.

These posts are so helpful

Groda

[PMRpro Ambassador]

There is a list of abbreviations in the FAQs, the link to which is at the top of every thread and in the Pinned Posts at the side on a computer, further down on a phone I think. Familiarise yourself with what is there - you will often find answers to many questions there. I'm sure you appreciate that it takes a long time to write them all out everytime and almost always you will find what they are by reading the context of the entire thread. The 3 you mention are methotrexate, large vessel vasculitis and tocilizumab/Actemra.

Folic acid may help but the hair loss is almost certainly due to the GCA affecting blood supply to the scalp - it often takes up to 6 months for the effect of serious systemic illness to be noticed. Collagen is absorbed by the gut as amino acids, not as collagen, A good normal diet supplies them all.

You can't assume the weight gain will disappear all on its own - you may have to take steps yourself, cutting carbs considerably if you haven't already done so. Some have avoided even the moonface and even at GCA doses by doing that from the start but everyone is different. Start with processed foods and added sugar, limit fruit and see if that is enough. The dry eyes may be the autoimmune part of GCA rather than the pred.

[DorsetLady PMRGCAuk volunteer]

Links from FAQs - and always worth looking there initially - are

Abbreviations -

healthunlocked.com/pmrgcauk...

Hair -

healthunlocked.com/pmrgcauk...

Plus when you have written you will find related posts - unfortunately the HU search engine as such isn’t that brilliant for finding out things before you post - one reason for the FAQs on this particular forum - and why some of us spent a lot of time writing/collating them. 🌸

Final comment - reducing every 2 weeks is a bit risky, it can take that long to know current dose is sufficient before you drop down …. 3 weeks minimum- but 4 is better. If it takes 2 weeks [sometimes longer in some people] to flare, and you don’t realise and reduce one or even twice, it’s all too easy for things to get out of control… then you’re in a pickle!

[Oxfordboy2]

Hi Just to start you off others with more knowledge will be along.MTX stands for Methotrexate comes in tablet or injectable.It is used to surpress the immune system like steroids do.

LVV which I have is large vessel vasculitis imflamation of the Aorta.I am treated with MTX for this.

TCZ is tocilzumab.Again this is given by injection or infusion.I believe only given in UK when you have intolerance to other meds and only for 1 year due to cost.

Hope this helps.

PS I have hair thinning due to methotrexate and I take folic acid 3 days a week.Sadly it hasn’t helped.

[DorsetLady PMRGCAuk volunteer in reply to Oxfordboy2]

Not sure if it’s been mentioned elsewhere - but many take folic acid every day [except for your MTX day] - but that depends on dose.

This link is about folic acid and MTX - and even though it refers to arthritis treatment - it might be useful -

creakyjoints.org/living-wit...

[Groda in reply to DorsetLady]

thank you Dorset Lady

I will take the folic acid. Should I take it everyday or 3 times a week. I don't take MTX.

Also do you recommend that instead of tapering down from 20 mg in two weeks I actually stay on 20 mg 3 or 4 weeks. I am from Canada but currently in Florida until Dec. 12. Perhaps I should stay on that 20mg while I am away. I have blood work onDec. 14 and see my Rheumatologist on Dec. 19. Any advise is much appreciated as I am new to this ninightmare.

Groda.

[DorsetLady PMRGCAuk volunteer in reply to Groda]

I think it would be a good idea to stay at 20mg -for 3-4 weeks - as I said reducing after only 2 weeks is always a bit risky.. if you feel okay at the 4 week mark, then it’s probably okay to reduce then.

As for folic acid - check it’s okay with any other medication you may be on… there are drug interaction sites online - or discuss with doctor or pharmacist when you get home.

[Groda in reply to DorsetLady]

thank you. I will do as you recommend. Stay on 20 mg for a total of 4 weeks.

[Groda in reply to Oxfordboy2]

thank you Oxfordboy2

this is very helpful. Also, the advice of taking folic acid 3 days a week. Maybe it will help stop the hair lose.

Groda

[Sharitone]

My moon face and the fat which had accrued above my clavicles started to disappear somewhere about 15mg, so you may not be too far now. I have slowly lost 15lb since reducing carbs in my diet at high doses of pred, though not so much on my tummy, as that is where pred likes to leave fat. However, this is a good thing if, like me, you have to inject into it!

[Holycow2]

Hello! I have PMR and also suffered with hair loss. I take folic acid and also biotin and found they have made a huge difference. I would highly recommend these!

[SnazzyD]

It is common for anyone who has an acute systemic assault to the body to lose hair and sometimes skin. It is often delayed. I was no different and my hair fell out in clumps like I was on chemo again some 5 months after my GCA got going. I was nearly bald and about to go on a cruise! It grew back after some weeks and nothing special but has done it again, but not as badly, after a spell of low adrenal function and twice after a couple of bad covids. In between these it has gone through phases of luscious, mad scientist, Dora The Explorer and grass.

[Viveka]

There are loads of posts on moon face and hair loss. Overwhelming majority say as you reduce the pred the face returns to normal and hair comes back. Sometimes it comes back wirey then it settles down. So it's unpleasant but temporary.

[Groda in reply to Viveka]

thanks Viveka. It is a relief that the moon face and hair loss is temporary. Hope that is the same with the added weight. Have cut down to 1 piece of multi grain bread per day and that is it for carbs. I don't like sweets much so not a problem there. Eating less than 900 calories per day.

[PMRpro Ambassador in reply to Groda]

As long as you reduce the carbs, the calories are less significant. Don't eat so little that your body goes into starvation mode which can happen when it is longterm!

[Groda in reply to PMRpro]

Thank you. Good to know. What about fruit?

[PMRpro Ambassador in reply to Groda]

Berries are best - bananas worst in terms of carb content! I find this site very useful for making better choices

dietdoctor.com/low-carb

It has nice recipes but also the images make it easier to remember what's what. YOu don't need to join and pay money - that just gets a wider choice of recipes, but there are loads of low carb recipes all over the internet.

[Broseley in reply to Viveka]

I wish my hair would come back. I'm down to 1 and a half mg pred and it's still falling out. It's now so thin and wispy I have to wear a hat when I go out or I do an impression of Bill Bailey! Folic acid and biotin have had no effect...

[GML19]

Dear Groda,

I was on steroids for 18 months: now 11 months off and on Methotrexate for 2 years: now on trial of no medication. I had hair loss, moon face, fat neck et al. I do not know when things started to improve, except to say that at the moment off all tablets tablets; - note my caution- my physical appearance has returned to normal and my hair has regrown. My current down-side is my skin looks very old but then I have just turned 80! This website has helped me considerably in providing me with my new normality through all medications. Thank you everyone involved.

Good luck Groda on your journey.

[Groda in reply to GML19]

Thank yo GML l9. Your post was very reassuring. I know I am in for a longish haul and am prepared for a very slow tapering. Will stay on 20mg for 4 weeks and then go down l0% only for another 5 weeks, etc.

[Gangley]

Hello Groda: From a fellow Canadian I think part of dealing with all these GCA problems is to be patient. I was diagnosed in January 2023, stated on 60 mg. prednisone, and in February started weekly injections of Actemra (TCZ) and finally off Pred. Sept 26th.

My hair didn't start falling out till June ( it came out in handfuls) and it wasn't until October that there was a slow down. My shaved head from the biopsy in January is starting to grow - sure taking a long time. I was moonfaced till about May and I feel my weight is finally back to Jan/23. A lot of the ladies from a forum I have joined take Biotin to help with hair loss. I haven't tried that yet.

Good luck and hope you get to where I'm at now - feel good and hoping for remission. Still on Actemra till end of January, then I'll see what happens.

Enjoy your holiday.

[Groda in reply to Gangley]

Thank you Gangley, fellow Canadian. I live in Collingwood, Ontario. I have been taking biotin and collagen since the beginning of this journey. My hair is thinning but not coming out in handfuls of clumps. Grateful for that. I will be put on Actemra in Dec., when I get back home. Looking forward to that. I am staying on 20mg of pred until I see my rheumatologist on Dec. l9. By that time I will have been on 20mg since Nov. 12. Hopefully that is long enough so I can taper down by l0%.

Concerned about the winter. I go back to Florida a t end of Jan. for Feb. Mar and most of April. Wondering what that means to my Actemra schedule. I hope I will be prescribed enough Actemra (and syringes) to take with me. I believe I will be doing the injections myself. If not, I have a nurse practioner friend here as a member of my club and maybe she would give me the shots. thanks for your advice.

Groda

[Gangley in reply to Groda]

Actemra needs to be refrigerated, but in a conversation with my contact at Roche he said it could be out of refrigeration for 2 weeks but you should check this out and how much you can take across the border. It's $1600.00 a month so one doesn't want to waste any. Also, depending on your insurance I don't know how much you can get at one time. I get one month prescription at a time. It will really help to get you off that awlful prednisone. Just so you know, I first got Actemra in prefilled syringes and found it very difficult to JAB myself so I had the prescription changed to the ActiPen - works much better. Good luck.

Gangley