Hairloss on pred

[Poppylop]

Hi all, I know I've talked about my hairloss before but just wondering how low on pred do you have to be before the hairloss stops, I'm down to 9mg now from 40 originally, I'm taking all the right vitimins and using shampoo and conditioner for thinning hair but it's not letting up, it's also in really bad condition, it's like candy floss, it's so depressing

[SheffieldJane]

I am down to 4 mgs and it seems to have recovered somewhat. Did I recommend Kevin Murphy ( all natural) hair plumping products? They are expensive but they really help to give the illusion of weight and density. You don’t need a lot. Available on-line. I am not on commission 😊but they really worked for me. Certainly gets rid of the candy floss look.

[Poppylop in reply to SheffieldJane]

Hi SheffieldJane , I just had a look on Kevin Murphy website, do you use all three items, shampoo, conditioner and the body mass. I've been using viviscal and plantur 39, alternating each time I wash my hair, I only wash it twice a week now but it hasn't made a lot of difference so far.

[SheffieldJane in reply to Poppylop]

If I am going to make an appearance anywhere I do. I also use a diffuser when I dry it and bulldog hair clips to give the crown a bit of lift. I use a little of the creams he does too. All hit and miss, I am not very skilled in these things. My fabulous hairdresser can make it look amazing. She uses KM products and taught me what to do.

[YuliK in reply to SheffieldJane]

😂😂😂. Candy floss is exactly spot on. 👍

[scats]

Please don't rush your reduction just to improve your hair, it's really not worth it. My hair went very frizzy and after about a year I had it cut short. It then settled down and I now have waves, nothing like my origional hair but acceptable. Try not to wash your hair too often, you will strip it of it's natural oils and it will be more frizzy.

You are taking the pred to control the inflammation in your body and the pain it produces, this is far more important and most of us who try to rush the reduction end up wishing we didn't because our inflammation has returned.

[DorsetLady PMRGCAuk volunteer]

As I’ve said a few times, don’t necessarily put all the blame on the Pred - certainly in some cases it doesn’t help, but your hair is affected more by the general state of your health than just the drug.

I’ve always had lots of hair - but it began to thin when I was in my 50s (post menopause), stressed about work and late hubby - way before GCA and Pred.

Much like that until I took Pred (following long time with undiagnosed GCA), and it did improve whilst on Pred (for some it does ) - now (3yrs in remission) my hairdresser reckons it’s in better condition than it’s been for 20 years.

During these times your best friend really is your hairdresser - if he/she can give you a style that makes you look better, then you’ll feel better. Maybe cut down on the shampooing as well- I’ve just gone 10 days because of shoulder operation and couldn’t get wound wet or in a position to shampoo and it didn’t look or feel as if it needed it!

.... and although difficult stop worrying about it! it will improve.,

[Poppylop in reply to DorsetLady]

Hi Dorset Lady I did have a hair appointment on 6th Feb but cancelled it because I usually get the roots dyed and was worried about putting dye on it, I have another appointment in a couple of weeks but I'm still worried about it, I wear it up all the time now because I can sort of hide the thinning bits that way, I did think about having it cut short but if I don't like it or the thinning bits show I won't be able to put it up, it's a dilemma 😕

[DorsetLady PMRGCAuk volunteer in reply to Poppylop]

Yes it is - I had mine long until I reached 40 and decided it wasn’t me! But it was - so dillied and dallied between short and long for the next 20 years until GCA started and I couldn’t cope with it long (couldn’t get arms up to do it).

However after a couple of years on Pred I decided I would let it grow again and go back to having foils in it - doesn’t need retouching so often as roots! I never found the dye was harmful.

Personally I would keep it long - as you say more ways of camouflaging the areas that need it - and there are so many hair accessories about nowadays to help. Can you tell I’m a hairdressers daughter? she wanted me to follow in her footsteps, but I didn’t - although sometimes I think I should have.

[SheffieldJane in reply to Poppylop]

I have highlights and low lights making use of what is predominantly white I imagine. Less stress than a full head of colour. The condition remains fine and I get no white parting.

[Hidden in reply to DorsetLady]

What I'm not understanding. How can GCA go under diagnosed for so long. When we all only have a window of only 24 hrs to get on high strength doses of Pred before potential blindness occurs. My rheumatologist kept asking me if I had any of the symptoms laid out for GCA, made me paranoid, I must say. Fortunately, I was never started on the high dose of Pred in the first place (maybe I was fortunate it was caught early) and I'm tapering at the moment. So, those that were prescribed high dose Pred, was GCA present at the time with or without PMR? Strange how we can gets aches one day then the next they've gone. First March I'll be down to 8 mg for the month, so hoping things don't change. Anyone out there had the same experience with starting on 15 mg then tapered after less than 2 months, like I have and continuing to do so without too many hiccups ??

Obviously one can never become complacent when PMR returned after 10 yrs for one lady who messaged this morning....how disappointing is that !!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Well I can only give you my experience - and that was nearly 10 years ago - and I keep hoping it was a one-off - but maybe not.

Started with aching biceps - thought it was because I’d been over active in the garden. Allowed 2 weeks, it didn't resolve, so wondered if reaction to statins (unlikely as been on them for years, not one never knows). Saw locum GP who wasn’t sure - so stopped statins to see if any difference. There wasn’t, saw regular GP who did inflammation blood test - came back satisfactory- so PMR /GCA discounted.

Pained moved from biceps to shoulder, with left always more painful. Frozen shoulder treatment prescribed and treated for next 11-15 months despite no improvement and increase in fatigue. No other symptoms.

Then started neck, head issues - typical GCA symptoms - but GP didn't join up the dots and neither did I - never heard of GCA and caring for late hubby. GP thought pinched nerves from ‘frozen shoulder”

Eventually eye problems - saw another GP - and I specifically asked if all symptoms related - his response - no!

Two days later sight lost in one eye - trip to A&E - diagnosed and on Pred within an hour - and other eye saved - luckily.

As I’m always saying, the majority of sight losses are because no diagnosis has been made, therefore no Pred.

Once you are on Pred whether for PMR or GCA, the chances of sight loss is reduced dramatically -it obviously does still happen occasionally.

[PMRpro Ambassador in reply to Hidden]

Potential - that is the key. And you don't actually have "only 24 hours" - generally it is thought to be about a week between first visual symptoms and the likelihood of irreversible visual damage. Not everyone with non-visual GCA symptoms has GCA affecting the blood flow to the optic nerve, GCA can affect a lot of areas but the symptoms and effects depend on which areas are involved. You wouldn't - shouldn't - be put onto high dose steroids without at least some evidence of GCA, if the clinical picture is of "simple" PMR then a dose above 20mg is often not called for. The very high doses used in GCA are reserved for patients with specific symptoms, usually jaw claudication and visual effects. PMR and GCA are not inestricably linked - you can have one without the other: although about half of patients with GCA also show symptoms of PMR only about 1 in 5 of patients with PMR ever show symptoms of GCA. I had some GCA symptoms - though I didn't know that then, I do now - but they disappeared and after I started on 15mg of pred never ever appeared again.

And how can GCA go undiagnosed for so long? It is a rare disorder - most GPs have probably never seen a case in their life and often if they do it is after diagnosis by the ED or a specialist and treatment with corticosteroids - an immediate game changer and removal of the symptoms. Recognising a disorder from your textbooks when it doesn't have a characteristic rash or other marker is not easy if you haven't seen a case in real life. Many doctors think there is an inescapable pattern to a patient presenting with GCA, they have a headache around their temples and bulging arteries and a few other things - but each individual symptom is the presenting symptom (what the patient complains about) in well under half of patients, sometimes less than 1 in 5. The headache can be occipital, at the back of the head, and one doctor told a patient it was "the wrong sort of headache". Wear blinkers and you may well not see the less direct signposts.

[Hidden]

It's a patience game I am afraid...tapering as much as waiting for side effects to ease. Don't forget your hair quality lags behind and much of the problem could be pmr/gca related. I had several changes to my hair quality and growth in my early 50s anyway before pmr symptoms. It's had several incarnations and amounts of hair loss. But it's more like my old hair in t erms of texture and growth now. I have heard others say a really good hairdresser and a good cut can help you disguise problems YOU are aware of. Others probably have no idea but it's obvs your confidence and sense of self that are the driving forces for being patient. If you can bear once a week wash try that. After a few weeks it seems to settle and you get used to it. Try a focus on anther aspect.... A new make up item that makes you feel good or clothes. I got new glasses that I really liked so that what my eyes (🤭) were drawn to in the mirror or photos.

[Dancingrosie]

Hi poppy lop. I know how you feel. I’m now 4 years into gca/par and started on 50mg now on 3mg. In the beginning my hair got thinner and thinner and curly but now back to normal over the last year. It’s thicker as well. So don’t worry as you reduce steroids it should grow back and thicken as normal.

[PMRpro Ambassador]

Mine has been through various stages on steroids - but it changed and fell out badly because of PMR pre-pred as well. It went frizzy, like a soap pad, it stopped growing at one point. But it is back to almost normal - I am a lot older and age changes your hair too.

I now wash it every 2 or 3 WEEKS - it takes time and patience to get there and I haven't used colour on it for 28 years, I have been grey since my early 20s, from 30 to 40 I coloured it and then it was too much bother - roots showed after a week. So I anticipated the grey wave years before it became fashionable.

However you look at it, chemicals don't do hair much good when it is delicate for other reasons anyway. I remember my mother bemoaning what a mess her hair had become and I suggested she stopped her regular perm and had a good cut - she was astounded at the improvement in its condition.

[Smokygirl]

I’m exactly the same Poppy! Started Pred around the same time as you but 15 mg. My very fine straight hair started to fall out two months ago and I’ve lost half of it. I take All the necessary vits plus 1000 Biotin. Hair still falling out and hardly growing —— nails are like witches talons!!!

I have just ordered Viviscal tablets. I’ve also just torn the meniscus in my knee and apparently collagen is good for that too! Shall see how it goes and report back! xxxx

[Blearyeyed in reply to Smokygirl]

Oh dear , you are in the wars , hope you feel better soon xx

[Smokygirl in reply to Blearyeyed]

Thanks so much dear Bee! Xxx

[Hidden in reply to Smokygirl]

Hopefully your knee will repair soon. Ouchy.

[Smokygirl in reply to Hidden]

Thanks so much Scoops! Xxx

[Paperroses]

I lost hair when I tapered down but it stopped somewhere around 10 to 9 mg. its been 3 months now and I do see some new growth.