I have had PMR for 6.5 years and have been on steroids for 2.5 yrs. MY hair is brittle and lifeless and generally looks dreadful. I also find life difficult due to severe stiffness and pain mostly in my legs. I would appreciate any opinion or advise any one can give. I am 74 years
Cynbil (Cynthia)
Hello Cynthia, I have had PMR for three years, when it was first diagnosed and I was on a high dose of steroids my hair thinned considerably, it is now a bit better but has never returned to the way it was. I used to spend a lot of money on having it permed and stopped when diagnosed with PMR, for some odd reason my hair now, although a lot thinner has a natural curl so it doesn't need perming.
Hello Cynthia - I have been on prednisolone for several years and find that I seem to lose quite a lot of hair when I wash it. It also seems to go through periods where it is straight and lifeless and at other times it has curl and bounce. I use a lot of gentle hair products and "leave in" conditioners which do help. I also try not to wash it too often so that the natural oils are retained.
I'm sorry to hear you have leg pain and stiffness that makes life difficult - do you feel able to talk to your GP about it to see what your options are?
Good luck and best wishes
Chris
Hi Cynthia,
I can sympathise regarding your hair, I've only been on Pred for 4 months and my hair is falling out , looks lifeless and feels dry and brittle. I am going to buy some moisture boosting hair products today.Am reducing and currently taking 8mg 9mg 8mg on alternate days. Mine was severe pain and stiffness in shoulders and tops of arms but can hardly turn my head today neck is so stiff. I do hope you go back to your GP about your legs, the steroids don't appear to be easing the pain for you. I don't know enough or have the experience to offer any helpful advice.
Take care
xx
Hello Greensleeves, Thank you for answering my email. I am sorry to hear about your neck pain, it must be uncomfortable for you. I have several problems with my right leg and I think it just makes every thing worse, I have suffered from sciatica for nearly 46 years due to a back injury. I have arthritis in my ankle and of course PMR which mainly affects my right thigh. The pain gets so bad I can barely walk and on top of that I have plantar fasciitis in my left foot. The doctor has tried all sorts of medication but there is a lot |I cannot take as I have problems with my stomach. So all in all I have a few problems. However I try to keep cheerful. I hope you feel better soon and have a nice week end. Cynthia x x
Hello Cynthia
I have been on pred for 6.5 yrs and am 64. Yes my hair has been affected by steroids but also as I have got older hair and body has changed so probably 50% is ageing.As with other advise I agree with using gentle products for hair and body after all we are WORTH IT don 't you agree!
Best wishes Kathy
Hi All
Talk to your GP about 'Folic Acid' for hair loss. And if he agrees, then talk to the dispensing chemist to see it if is compatible with every bit of medication you are one. Chemist know more about contra-indications with both prescribed and OTC products and every time a new prescription or you want to buy OTC check with them first.
thank you all for your comments, It is nice to know that I am not alone with this awful illness. I am taking 9mg of pred at the moment as I have had a recent flare, so now it's back to reducing again at a much slower rate as the doctor has recommended six week intervals between reductions, He ho onwards and upwards. I hope you all have a lovely week end with out to mu discomfort Cynthia x
slower rate
Hi Cynthia,
I am into my 3rd year with PMR, but on the mend I hope. I, like you had probs with my hair on the higher doses - from 30mg to about 12mg, but my hair improved as the doses came down. I noticed more hair coming out and my hair seemed lifeless, but I found that using a conditioner that gives body and also hairspray before styling helped lots. Conditioner by Pantene and hairspray by Silvikrin (natural hold). Putting a curl into your hair also makes it look thicker.
I know grooming is hard work when you're stiff and achy, but if you're not up to it then what about finding a hair stylist that will come to you? I have one now and again and she's much cheaper than going to a salon.
All the best, Pats.
Hi Cynthia You have taken me back to when I was having the same hair problems. I am now off steroids - but the thing that worked for my hair during the period I took steroids was a course of folic acid tablets. Yes I know pregant ladies usually take this, but I can assure you that it worked for me. You could also try using VO5 hot oil treatment as this will again help with the dryness/brittleness. Good luck and take care
Bethy
Hi Cynthia, Yes I also have leg pains, some days it feels like a workout just to get up the stairs. I have to hold on to the rail and pull myself up. To over come this problem I get up everyday and do a light workout on my legs, it helps. What really helps me is if I work our with weights, then I can go up the steps with no problem, I make myself work through the stiffness because for me, I know it helps, it might be different for others.
Yes, I have been losing a lot of hair and I am only at 4 mg. I do take folic acid, but I also take Biotin, very good for hair and nails. I agree with the other comments, do not wash as often, use gentle shampoos and good conditioners. My hair has also gotten more curly, but like you say brittle as well and really fuzzy, I use hot rollers to calm down the frizz, it works quite nicely. (Yes VO5 hot oil treatment is great )
Take care and God Bless!
Lawrie
Hi Lawrie nice to hear from you. I admire you for doing the leg exercises. I just wish I could, my physio gave me exercises to do but I just couldn't do them as the muscles in my right thigh keep going into spasm , but If you say they help I will try again. It seems the problem with the hair is quite similar as my hair is really soft and fuzzy, It looks like rats tails at times .and so lifeless. I have taken to only wash it every second week and to use a nice thick cream conditioner, but to be honest nothing seems to make much difference With regard to managing the stairs, I have to do what you do, pull myself up and hope I can get to the top, ha ha . Take care Cynthia x x .
Hi Cynthia, Yes, you're not alone with hair problems, but mine is very different from yours. I am 73 and was diagnosed over 2 years ago, my hair became so soft it was/is completely uncontrollable, my hairdresser sugggested not using any conditioner or shampoo that contained conditioner. She also suggested that I use 'Mess it up Putty' which gives body and a little more control. When I was on a lower dosage of Prednisolone it improved but after a nasty flare at the end of last year I went onto 9mg for 3months, now on a slow reduction plan from my rheumatologist, 8mg this week.
Another problem I have is sweating to extreme when I exert myself, just vacuuming one room will cause the perspiration to literally drip from my face and resulting in my hair becoming wet. Does anyone else have siumilar problems.
I only become aware of PMRGCAuk when I was in a bad state in December last, just wish I'd known about the site when I needed it most and felt scared and alone at the beginning.
Hi Biblifleur,
I can sympathise with you regarding the hair problem. I have been on steroids for 6 months. In the last 6-8 weeks my steroids went from 8mgs to 30mgs. I have found since being on high doses that the slightest exertion and my hair is saturated. I spoke to my GP who said the excessive sweating is a side effect of the Pred and should subside when the dose lowers again. I would love to find something to minimise the wet hair look, not an attractive look when you are meant to be looking after patients.
I agree this is a terrific forum, there is always someone to help and make you feel less alone. I often find because you look well, people don't appreciate how exhausted you feel. I have had a rough few months and currently have laryngitis caused by thrush, from getting so run down. So taking Drs advice and getting plenty rest, but I do miss work. Hope you are not suffering too much, have a lovely weekend
Cheers, Runrig x
Hi, Nice to meet you, It seems we are very similar with our problems, with the hair and especially the sweating. Like you I don't have to do much for the sweating to start and for my hair to be soaked through. I have severe night sweats too. My leg pain can be severe at times and gives way a lot with sudden pain preceding the weakness. it make me squeal a lot and the occasional grunt. I hope we can keep in touch through this site best wishes for an improvement in you symptoms, take care Cynthia x x.
Try extract of sage or evening primrose for the sweating, but again check with the pharmacist as both are homeopathic and you need to see if they are compatible with all the medication you are taking.
Hi Runrig. Thanks for your input, it's good to know that I'm not alone with the problems. After a very bad sleepless night, which I get occasionally, today I have bad aches/pains in my shoulder - not the usual one and now I feel back to square one. This is after feeling really good for over three months so it will be a phone call to my rheumatologist on Monday morning. My GP is useless and looking back I think it was his bad advice that caused such a bad long flare-up at the end of the year.
Thanks also to sambucca for the homeopathic suggestion, will certainly try that.
Hi Biblefleur Sorry to hear you are in pain with your shoulder. I know it can be very uncomfortable. I am glad you feel able to phone your Rhuemy. I hope he can help you. take care Cynthia x x
Hi Cynbil I first noticed PMR symptoms in October 2006, just 7 months after I retired. As with all of us I hadn't a clue what was wrong with me. PMR was then diagnosed in January 2007 and like a lot of us, I gained three and half stone in weight, had the moon face, but right from day one of taking steroids I suffered with dreadful bowel/digestive problems. By August 2010 I was down to 2 mg steroids but because of the severe digestive problems I stopped taking steroids altogether. I had to have a colonoscopy at the end of August, and because I felt fine off of the steroids I decided to stay off of them and take my chances living without steroids. However I did have withdrawal symptoms from the steroids, and I also suffer from osteoarthritis. For a while I wasn't sure whether or not PMR had returned, but I just stuck with living without steroids. Since the beginning of last year I decided to go back to pilates and also I decided to attend an aerobics class once a week, and gradually my health has improved. At the beginning of April this year I decided I had to lose the additional weight that I had gained while on steroids and which I was finding very difficult to shift. So now eat much smaller portions; have cut out the bad carbs, and try to walk 3 miles four times a week and of course continue with Pilates and Aerobics. It has been a long journey but I feel so much better. However the arthritis persists, and on a day like today, overcast, a bit chilly and damp the aches are with me. But once I had done my walk this morning I felt so much better. I do hope that the above is of some help. Take care and be patient with yourself as you will get to the end of this horrible illness I am sure. Bethy xx
Hi Bethy, I am so pleased you could tell me about you struggle with PMR.. I was first having severe pain in my right thigh and could barely walk. I went to the doctor who gave me paracetomol and cream this went on for about 4years until they decided to do a blood test and my ESR levels was through the roof. I had developed shoulder pain and stiffness by this time and was then told I had PMR . I was put on 15mg of pred which helped a little bit but after about a month they seemed to stop working I told my doctor I thought I had been misdiagnosed because the pred didn't seem to help. but I have never been offered more than this level of pred. This was in October2011and since then I have struggled to get off the pred only to have frequent flares I have had all sorts of pain management also hydrotherapy but nothing seems to help I have difficulty standing from sitting and sitting from standing due to the muscles under my but being so stiff and then have trouble walking I basically shuffle around the house. I try to go to a club twice a week but that is becoming difficult due to the pain in my left foot making walking extremely painful. Like you I considered coming off the Pred and managing just on pain killers but that would still be another year to get off them to reduce 1mg every 6weeks I have gained about three stones as well and I don't feel I dare put on any more, but don't seem able to lose any. My doctor doesn't seem very helpful either. So I just feel stuck in a hard place at the moment. Any way enough of the rant, I hope you continue to improve, Take care and God bless Cynthia x x
Don't tell me that, my hair is the only thing I have left from my previous life without PMR. I always take folic acid. I also only use a royal jelly shampoo from Holland and Barrett. I still dye my hair every 6-8 weeks, I can't give up that. I might feel awful but I don't want to look awful as well. I never use heat on my hair, but having long hair the brush is full every morning. In fact I don't use anything on my hair other than shampoo and conditioner. I hope you manage to sort it, our hair is our crowning glory.
Almost a month since diagnosed with GCA/PMR
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