I've just joined this group and seem to be close to you in duration and location. I read your post about losing hair but didn't read all the replies. Several months ago ( maybe 6), I started losing some hair while on 20 mg prednisone. Lost even more about a month later when I was put on Methotrexate. I keep my hair short....it is now extremely curly but not falling out. I've changed shampoos and conditioners. From Amazon, I'm using Andalou for thinning hair. I'm also taking a supplement, Adrenal Edge. I know not everyone would agree with supplement usage but I think it works for me. I started using the products all at about the same time. Something is working ( or happening ). Fortunately, no more hair loss. All of us have so many things to deal with.....for the moment, that's one off the list. If I could just find a solution for the pain, fatigue, huge weight gain, buffalo hump, round face and belly.....I'd be back to my old self.
Hope you're doing better, cjatthesea
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cjatthesea
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HI cjatthesea...Glad to be in touch with you. Sorry to hear you are dealing with these same illnesses. I did notices you are from US...I'm in Florida. Where are you? So glad to hear your hair stopped falling out...I wish I can say the same... I think mine started around 15mg. It got very thin. As of these last few weeks I have been wearing my wig most of the time since friends & family are down here in the sunshine state for the holidays and then some longer. I will look into the Adrenal Edge as long as it doesn't interfere with the Prednisone. All your side effect are part of this nightmare, some more than others..My face has gone down quite a bit...almost normal at 10mg..some days not as good..weight is pretty good, but not like when I started....Worst thing for me now is my hair. What dosage are you on now? I am stuck at 10mg for 2 months, afraid to come down fearing a flareup...every once in a while I get a headache, shooting pain in my head, so I'm hoping it's a steroid withdrawal. My CRP has been elevated for the last few bloodtests, but Sed Rate is good. Just staying at 10 for a while longer,, Have to come down very slow at this point. Are you still on Methorexate? I'm on Pred. since Sept 2014. Wishing for the New Year we can all get off this drug and once again be normal. I will check out your shampoo & supplement. Thank you...hope you start to feel better and hope to hear from you.
Nice to meet you....sorry it's under these circumstances. Sounds like you've been on prednisone for about four months longer than I've been. You're tapering fairly quickly. I've been at 17.5 for six weeks and don't feel ready to go down further right now. I had been at 20 mg for over four months. Spoke with my rheumy on the 22nd....he wants me to stay where I am. We are going to be doing some traveling so will keep it where it is until late Jan. Sounds like forever but have recently accepted the facts about this disease.
It's great to have found this site. I've spent much of the day reading. Much of it is disappointing news. But, at least, it's news.
After talking with my husband....I think I'm going to drop the MTX. I thought I was doing ok with it but each week....I have more problems. If necessary, I can always go back on it. Or up my pred. Or go in for a burst. At my last doc's visit......figuring out tapering with no additional problems put me at Jan. 2018. That's the date, I might be free of the Devil's Drug. Not very promising.
My blood work is always good. Actually, abnormally low. The docs say to just ignore it unless the numbers suddenly go up. Medical testing on me has never been as expected.
I'm certainly not bedridden but have daily pain. Some days more than others. Don't look or act like myself. I was an active (almost) 68 year old when all this began. A year later, at almost 69, I feel ancient. Early on, because of a 54 hour break with the pred., I lost some vision and some hearing. Now have cataracts and glaucoma.
We winter in Fl. and the heat bothers me. Sweats then shakes. Perhaps I'll do better without the MTX. Guess I'll find out in about a week.
Hope you find a cure for your hair. Seems there's always a challenge waiting around every corner.
Also so nice to meet you...I don't feel I'm tapering quickly...Last winter when I also reached 17.5 I had to go back up to 40 and from there it took 3 months to get out of the 30's.
Prior to that I was only staying on each dosage for a little over a week...way to fast. When I got back to 40mg I stayed on each dosage for 2-3 wks and managed to get down to 15mg this past June with a 5mg drop each time. At 15mg Pred attacked my gallbladder and had to have it removed. Lots of horrible side effects on 15mg which I'm sure you know all to well. Stayed on 15mg for 3 months and started to tapper 1mg at a time for 3 wks each (some longer). So now I'm on 10mg for 2 months and don't feel ready to drop to nine...sometimes I drop 1/2mg for a week and then drop the other half...You have to listen to your body and sometimes not the Dr.
From the things on read on this forum..not many good things about MTX. I would not go on it. From what I know it has worse side effects than Prednosone. But if you feel it helps you, you have to do what you feel is right for you. I don't have PMR, so I am very active...I go to the gym 4x a wk and walk 5-7 miles with a friend about 2x wk. I actually feel very good except for the few symptoms I feel every now and then in my head. I also got this disease at 68 and just wish it would GO AWAY.
When my CRP is raised like now, it is not always the disease...that test measures inflammation in your body and doesn't necessarily mean it is a flareup...could be infection, or something else going on. So I choose to stay at my present dosage longer than go back up...
Sorry this is so long and also so sorry about your vision. I just hope things start going in the right direction for us and get back to ourselves..
Where to you go in Florida and where are you from. I'm originally from NY. Hang in there and hope for the best in the New Year.
Gosh, Bert403, you've gone through a lot during the last year. I know, with GCA, you never know what will happen next. The PMR doesn't help....daily pain.
After discussion with hubby last night...decided to stop the MTX. Has started causing more problems and can't say there is anything good it's doing. We'll see how it works....can always up the pred. if needed. I was on 15mg for a short time last June....didn't work. Went to 20, now at 17 1/2.
We winter in Cape Coral. I have a rheumy there but don't like him. My rheumy here has arranged to care for me from here ( South Carolina ). Have a load of scripts, lab orders ( results will be sent to him ). He trusts me to evaluate my situation. We can always use the ER if I need a' burst'.
Since you can exercise.....does it keep your weight in check ? Just wondering, I can't exercise anyway. I'm sweaty and winded in seconds. Guess I should move north. ( We're from the South )
Where are you located in Fl ? Not a great place to be if you need a wig. Several years ago, my older daughter had breast cancer. During chemo, she wore scarves....very chic and more comfy than a wig. Guess we do what we need to do.
I've realized I can always find someone worse off than I am. I pray a lot and know.....someday I'll be well.
Hi...Hopefully your making the right decision with MTX. Go with your heart and hope for the best and feel better.
I live in Ft Lauderdale...Cape Coral is about 2 hrs from Lauderdale.
I did gain weight on this drug, but I have lost quite a bit as I tappered. I have exercised regularly my whole life and I'm sure it helps, but I eat very healthy and NO SALT. I haven't eaten out since this started other than a salad. Restaurant food is full of salt and the few times I tried it, my face was like a balloon the next day. For me the weight is under control, it's just my hair like I mentioned previously. It's very disturbing for me. I have a beautiful wig ( I wish my real hair looked like this) very expensive, probably why it looks so good, but it's still a wig.
I'm hoping to tapper to 9mg in the next week or so and just hope no flareup.
Hello. My hair, too, is thinning. It used to be much thicker. Also, strangely, it's straighter! It used to be wavey. I've heard this from other people too. Peculiar.
But my main problem is teeth. Two crowns which previously sat happily, doing nothing in particular, have fallen out unexpectedly! Is this due to Pred or to
Alendronic acid, I ask myself? My dentist is puzzled, but perhaps he should know more. I only know it's an expensive situation. All comments welcome.
Thanks for your question. With the two recent crowns I spoke of today, it was just the crowns that loosened and came away. The roots were still in place (I hope!). The crowns weren't that old either -- maybe 3 or 4 years (about the same length of time I've been on Pred and AA.)
However, last year, I had another crown problem and, on inspection, my dentist said he couldn't save that root, but sent me to a specialist clinic to see if they could help. After their inspection they suggested that I should have a complete extraction. This proved to be very strange, in that the root, when it came out, bore no resemblance to a normal root. It was soft and rather jelly-like.
I am now undergoing some investigations to see if I can have dental implants to fill the gaps, but I have to wait and see whether the specialist dentist considers my jawbone to be strong enough to take implants.
How bizarre! However - were you told you needed to indulge in perfect mouth hygiene when on AA? Your dentist does know you are on that I assume? Because major dental procedures while on it are not recommended and some dentists refuse to even extract teeth. And do you have a dry mouth?
Yes, it is bizarre, isn't it? No, I was never told to ensure perfect mouth hygiene when on AA, but I always try to do that anyway, so my problems can't have anything to do with not looking after my teeth properly. And no, I don't have a dry mouth.
Neither my own dentist nor the specialist dentist I visited who extracted the tooth with the jelly-like root mentioned anything about not wishing to treat my teeth because of AA. Both dentists knew from the beginning what medication I was taking and why I was taking it.
Any thoughts would be appreciated as I'm left with substantial gaps and feel quite embarrassed when I talk or laugh, and I'd like to go for implants if I can (in spite of the cost) to allow me to live normally. Also, food is becoming a problem too. I don't want to be reduced to eating Soup all the time!
It has helped a lot of people reduce more easily and steadily - you can stop at any point , you don't have to complete a stage. It isn't just patient hearsay - it is being used in a clinical study and has been approved by several rheumies when patients asked.
And you are so right - you need 3 weeks at least at a new dose to be sure it is still OK and by doing that and maybe only having to go back one stop you use less pred in total than risking a flare and needing to start over again.
I have lost hair twice. Once it stops coming out it takes 3 months and starts growing back again. My hair dresser and Dr. Recommended taking biotin 50000mcg for hair and nail growth. It seems to be working for me. The pain and fatigue, your not taking enough Prednisone, once you are the pain and fatigue will disappear. Moon face is because of the Prednisone, weight gain same, belly fat, I hear Ya!!! Get the pain and fatigue under control and you will feel soooo much better. I just had a major flare, I was done to 4, I had to go all the way up to 8 to feel better. Now I will work myself back down, very slowly!!! Good luck, but feel better!!💕💞
The pred may not deal with the fatigue - it is due to the underlying autoimmune disorder that causes the symptoms we call PMR. In some people pred leads to a boost in energy but by no means everyone is so lucky!
Seems that bad hair and lost hair is part of the PMR/prednisone journey! I have been on prednisone for 20 months. About 8 months ago I went through 6 months of horrible, dry "doll hair" that could not be touched by any of the products I tried. I used every pricey conditioner, shampoo, etc. that my daughter and I could find, to no avail.
i cut it very short. Then, for no real reason, it got better. I had tapered the prednisone slightly, from 10m to 8m, over this time. In any case, I know how frustrating it is. I think most of these odd-ball changes to our system will come and go without us havng much to say about it...but it does bet better!
Your description of your hair is exactly like mine....doesn't even look like hair anymore...It's somewhat promising to hear things got better between 10 & 8...I'm finishing 10mg and hoping soon my hair will improve. Thanks
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