Have had PMR since Jan 2015. Started on Pred 20mg and from Mar supposed to decrease by 1mg/month per GP. My rheumatologist preferred I try reducing more aggressively and said if I found it problematic to do an every other day routine with each decrease. For some reason I can't get down past the 10 - 11mg dose. Also in the past few months my hips have been painful and walking is unsteady. My GP says that it may be the Pred but I think it is the PMR. Desperately want to reduce dose because of hair thinning and wt gain. I know the pain relief is the first priority but I watch every morsel I put in my mouth, can't sleep and hair is falling out. It so frustrating that most MD's don't know as much about PMR as this forum!!! Has anyone found if Biotene (sp?) helps with hair loss?
Hip and low back pain: Have had PMR since Jan 201... - PMRGCAuk
You have just mirrored my life Alison. I too am suffering both weight gain (despite curbing the carbs), hair thinning, insomnia as well as palpitations, dry sore mouth and on and on and on. The desire to reduce the Pred fills my every waking moment. Have just reduced by 1mg to 15mg disregarding the docs request to make it a 5mg drop and 5 days in, the old hip pain is back, together with fatigue. Like you, the doc says it may be Pred withdrawal not PMR causing the pain. I'm soldiering on for the time being to see if it settles rather than reducing again, as despite being desperate to get off this medication, pain relief and quality of life is paramount even over the dreadful side effects. I'm very aware of avoiding a flare. It's all very frustrating. Biotene is a mouthwash for dry mouth symptoms. You may be thinking of Biotin which is a Vit B complex supplement. I don't know much about it's effectiveness, although if you can believe the reviews, it's a miracle product. Maybe someone here will be along soon with more info.
Oops. Yes. Meant Biotin. I think this whole experience + the Meds have given me that "brain fog" frequently mentioned. I too have palpitations. I wore a cardiac monitor for 24 hours. If course I didn't feel anything significant during that time. There were some minor events but all within normal range. I get so frustrated when I read about people just dropping pounds with reduction of carbs etc. I have tried everything and keep outgrowing my clothes. Of course that typical midriff area gain is what the prednisone causes. Also the moonface. Sometimes I think I'll never get over this. Would like to see some regrowth of hair. We are going to Hawaii in January and ill look like a walrus if I can even get into a suit.
Sheesh...what a string of complaints. I apologize 😃
Hi Alison 12345, other than the hair loss, I'm In the same boat. Diagnosed autumn 2015, put on pred, bounced the weight on and the moon face. As soon as the doc told me to reduce the pain started! I'm now in process of coming off pred as gained so much weight it's making my back problem worse. I'd never even heard of PMR until diagnosed. Its about time the medical profession studied this condition and hopefully came up with more answers. In the process of researching a LCRF diet. Good luck. Xxxx
Heck, no apology needed! You sound as if you are going through a bad patch. It's ok to vent off steam. How exciting to be visiting Hawaii! Something to look forward to. I know you don't feel comfortable with yourself at the moment, but really no one else will even notice.Maybe there's a tankini out there which will suit you. I swim for exercise and got a reasonable one which covers all the bumpy bits. Not the best time of year for choice though. I could come with you and then you can sit next to me on the beach and look definitely slim!
My echo-cardiogram also showed nothing untoward which was comforting knowing there's nothing wrong with the old ticker. The cardiologist said he had no doubt the issue was being caused by the Pred especially as they appeared to be making me hypo. I have to say they have decreased in intensity and frequency the more I reduce. I hate my moon face although I no longer have wrinkles! I've gone up a full size in clothing in 3 months. I must admit if I miss out simple carbs and keep complex ones to a minimum I feel better although it makes not a jot of difference to the weight. I'm just trying to embrace it all and consider Pred as my ally not my enemy. Do you take vitamin supplements now? If they don't include the B range maybe you could add them to what you already take. How long have you been stuck at 10/11mg dose?
Did the hip pain start the day after you reduced the pred - which is more likely with steroid withdrawal? Or did it take a couple of days or more to appear - which is more likely with the inflammation returning? The pred often doesn't do much about the fatigue so that may just be the balance between steroid rush and not - but I wonder if you have bursitis which is just kept under control by the pred. Would your GP consider trying cortisone injections for trochanteric bursitis? That made a big difference for me - once that was out of the way with local therapy, I was able to reduce the oral pred.
Hi Alison, I have had pmr for 18 months, I am down to 3 1/2 g preg., and did suffer hair loss untill my friend mentioned that her hair was growing a lot of new growth. She put it down to Chia seeds. So started having them regularly myself. I now have normal hair with lots of new grow visable.
Hope this may help.
Hi Alison, I had lunch today with my friend who first said her hair was growing and said it had to be the Chia seeds. I asked how many a day she thought she had and she said about a table spoon on her sandwich at lunch time. I have about a tablespoon on my scrambled egg that I have for breakfast and then some sprinkled whatever we are having for lunch and dinner. On line one site said you can have 1 1/2 Tablespns twice a day. I also sprinkle them on my husbands meals and I have noticed his hair has thickened up too.
On line it said they are very good for bone health as they are high in Calcium and other vitamins etc that benefit bone health.
My brother has thick hair and has always taken a Zinc suppliment.
Recently my friend and I both had our bloodpressure taken and both had very good readings mine was almost normal. I think this may be because of the Chia seeds also.
Hope this helps as no one wants thin hair .
The hip pain may be due to bursitis, it often runs alongside PMR. Check it with your doc or rheumy. Your rheumy is not infallible - if he thinks you can reduce 'aggressively' with PMR then I don't think he is keeping his knowledge up-to-date. That's one thing you can't do, PMR will jump in and bite at any gap in the defences.
The 10mg mark is where a lot of people become unstuck and if this happens I know that medics in the UK will persevere with 10mg dose for several months, it does seem to make the subsequent reductions easier. There's another sticking point at 5mg where the same happens, but that is easier to cope with as staying at 5mg for a long time means you get the support but without the side effects.
Unfortunately, reducing steroids with PMR is not a relentless run to zero, much as we'd like it to be. It's finding the lowest dose possible which will contain the inflammation while giving you some quality of life. And that may well mean staying on one dose for several months.
Hi...I am also having the same issues with thinning hair. I posted about Pred and Hair loss a few weeks ago...maybe you can read the helpful and some promising comments. I have been taking Biotin and Folic Acid since August and sorry to say it does nothing. Hair still falling out, just hoping it stops soon. I am also on 10mg and pretty much stuck...hoping to reduce to 9 mg soon, but CRP is creeping up although Sed Rate is 8. Will stay at 10mg and hope hair stops thinning...maybe Biotin helps some people, but for me it didn't. I am still taking it,
As polkadotcom says - your rheumy may prefer you try to reduce aggressively, unfortunately the chances of the PMR being happy about that are about nil! If the dose you are trying to get to is too low to manage the inflammation that is topped up each morning with a new batch of inflammatory substances (cytokines) then the symptoms will return. As she also says - 10mg or so is a common sticking point. Top USA experts recommended a long time ago that any reduction in PMR should be no more than 10% of your current dose, so not more than 1mg at that stage. Even that is too much for some people and this approach
has helped a lot of people - but even then, you won't get below the dose your body needs.
The low back pain may be due to something called myofascial pain syndrome which leads to the formation of trigger spots of concentrated inflammatory cytokines, the same as cause PMR symptoms throughout the body. The trigger spots are hard knots of inflamed muscle fibres which may improve with higher doses of pred, returning as you reduce. They can be dealt with using local cortisone injections into the muscles or manual mobilisation techniques by a physiotherapist. In some countries you can find doctors who will use a technique called needling but I don't know if there are any in the UK - I do know of it being done in the US and Canada as well as mainland Europe. Personally, I got a lot of relief for this sort of problem with Bowen therapy and so have several others on the various PMR forums. It is offered by the University Hospital of North Durham chronic pain clinic so it isn't a totally "alternative" approach, but is recognised by mainstream medicine.
The hair loss may not just be the pred by the way - it often happens several months after you have been ill. My hair thinned when I had just PMR, during the 5 years I wasn't on pred. I also gained a lot of weight because I simply couldn't move and exercise as I had done. The pred then made it rearrange itself to round my midriff! I did gain a lot more weight with Medrol but have lost it all - but it was slow and hard work. If I eat more than about 50g of utilisable carbs a day I don't lose weight - and 50g/2oz is NOT very much believe me!
Biotin didn't help. But Rogaine (for men) did help. Was on pred for 3 years with PMR. Now back on pred much larger dose for GCA and the hair is very thin. I would be happy if that was my only problem. I have purchased several wigs and having an interesting time with them. Lost weight when I gave up carbs because of sugar problems. Trying to avoid medicine for diabetes. So far it's working. So I have given up a little vanity,but not all. Just want to feel energetic again. Good luck. Slow reductions worked better for me.
When I went on Methotrexate, my hair fell out a lot and I started to take Biotin. The hair grew back quite curly- it was really straight and lank before- and it is much nicer now! I get lots of compliments! I always say it is the one good thing to come out of all this!
Recently, my hair has been coming out again ( don't know why) and I have started back on the Biotin as it did work for me before. With all the drugs I am on and the PMR, I think the hair is under stress so not surprising it is falling out more than usual.
As far as weight is concerned, I noticed a lot went on at the beginning of taking Pred. , having, like PMRpro put on as well due to immobility,in all the Pred. places and then it continued to go on slowly but surely and I put on 2.5stones in total in 2.5 years of Pred. In May, I decided to do whatever I could to change that and became more dedicated to healthy eating, getting advice from experts because I have always had disordered eating and been seriously overweight for most of my life. So far, I have lost all of my Pred. weight but still have a way to go before I will be satisfied with my weight. This is a life change, not a diet as diets never work in the long term.This was also done with very limited mobility, so I am looking forward to losing even more when I can move about again!
I suspect we are all different in terms of what happens to our weight when on Pred. We can then only do our best and not give ourselves a hard time about it. We have enough challenges without criticising ourselves in addition. Our compassion for ourselves will help us with anything we want to do. And that is my Xmas wish to everyone on this forum- Be kind to yourself- it helps! x
For about 4 months this autumn I had all the symptoms of hypothyroidism - cold, weight gain, hair falling out, nails ripping... Eventually I saw the GP and had a blood test - normal. But of course the symptoms had all but disappeared before I had the blood taken.
Maybe I can lose some now????
PS 5kg is 11lbs
Allison, you reduced to quickly. You should be between 15 and 12 right now. I have too lost some of my hair twice in 4 yrs. I had been around 5 mg for the two past yrs. it is a very hard point as is below the 10. Weight gain yes! I had a bad episode last month and was down to 4/3 reduction but the holiday blues pushed me into a major relapse! I am now back up all the way to 8 mg to be without the terrible pain and fatigue! Life without all this PMR pain is worth the higher does! Good luck!