Hi All, just wondering if anyone has noticed any thickening around the neck area and especially at the back of neck?
I look like a bull frog and have a few spare tyres around what once was a waist!!! Grrrrr I hate feeling like a blob!
Lyn,LynM and Knitwit, I have dieted and weigh 10 or 12 lbs less than I did when I started on prednisone in Feb., but I have a little bit of a buffulo thing, but 3 other real funny places. In the hollow place under the "Adam's apple I seem to have grown a little fat pad. The on each side where the neck joins the shoulders, there are really swollen looking places. Like someone buried golf balls in my neck! It looks awful. I'm fairly thin to have these fat neck places. Lyn, I so hope you are right about it going away. I'm down to 8 mg.
It's nice that this forum has become more enlightening and enjoyable. I've watched it for a couple on months, and not many folks were talking.
Hello everyone
I'm "suffering" for taking 20mg prednisolone: I'm solid from breastbone downwards, my face has ballooned beyond recognition and my buffalo hump is affecting the nerves down my arms! I just feel as if I am being poisoned. The only advantage is the effect on the PMR which has improved so much that I can walk now. (Feeling rather down at the moment as I have a chest infection, so please ignore my snappiness.)
Oh for a drug that cures it all without the side effects.
Hope you are all having a better Saturday.
Love Judi
Hi Lyn,
Thanks for your post....I have the bumps/pads of fat/mush and the sides of my neck above my collar bone and in the hollow spot below the adam's apple, as Betsy noted. I am currently at 10 mg, when I see my rheum. on 12/6 I can go below., I am guessing to 7.5.
Some docs say that going below 10, we should see some of the "mush" go away. But from what I have been reading on the posts, it appears that nothing happens until we are off prednisone all together...My face has some puffiness, but not the balloon, and my eyes are puffy. Also, Betsy, you are on 8 mg and have the same 3 places of mush that I do.
Betsy, please tell me how you were able to lose 10-12 pounds while on prednisone..............I really haven't gained weight, just added these crazy puffy areas....and the waist is one of them.........it feels different from fat....the best way to explain it is mushy....
Thank you,
Janet
Thanks for the post, Janet. You've got that right. It's not fat. I don't know what it is. My regular doctor said it's adipose tissue. I'm like you. It's mushy. I worried that it was something about the lymph glands near the collarbone. He said it's not.
I lost weight because I wanted to so badly. I was so depressed and miserable. Everytime I passed a mirror I would almost cry. It's just a horrible disease. Besides the pain, frustration, and havoc it plays in our lives, we don't even look like ourselves. Everyone says it will all go away. I noticed a small difference in the swelling in my facewhen I was at 12 1/2mg, then a little better at 10. Now, I'm going down 1mg a month, and I can almost see myself again. At least it's not grotesque. I'm feeling much better about it. I can tolerate the waist better than the face and neck. At least we can cover that up. We can't give up, girlfreind. Good to hear from you.
The last time I saw my doctor, she was pinching my cheeks and asking if I'd noticed any puffiness in my face. I'd read about "moon face" and was waiting for it to fill in the wrinkles! Oh rats, that hasn't happened yet, and I keep poking around looking for the "buffalo's hump".....haven't found that yet either but definitely notice some increase below my chin and around my middle.
I lost weight when I was on higher doses of prednisone because my taste and smell were nasty. I'm now at 13mg and food is much more appealing
A friend of mine has RA and has been on a maintenance dose (5mg) for years......I don't ever remember her looking puffy......it must affect people differently? Judy Hi All, It is so bizarre(bizzare) how the pred affects us all differently along with the sypmtoms of PMR...I am 53 or will be in December....it really slowed me down intially, still have some pain and stiffness, but I plow through it............I am a doer, and it ain't gonna stop me! I am hoping that as the dose lowers, the pain won't increase, I am keeping positive...as the prior two tapers have been very manageable. 15 mg to 12. 5 to 10 mg............... Take care of yourselves, Janet/puffy All of you are really funny today! Thanks for making me laugh. Knitwit, I have this theory that prednisone causes us to take on a Tazmanian devil shape, large face and shoulders, girded looking large breasts tapering down to no butt and ever diminishing skinny legs and arms. The prednisone curse. We all have to have Puffy's attitude I think (on the days that we can)... fight it, don't give in, and someday we'll win. On the days we just can't fight , we just have to go to bed and pray. It's good to get to know all of you. I'm going to look up your profiles and see where you are all from. We may be separated by miles but we are together in this fight! I'll be so glad when I can begin tapering off for good. I've tried to drop to 15mg yesterday and today and I am already feeling the pains in my thighs again. Just grin and bear it I suppose. Hope you are all having a good day today. Love Judi Judi, I know, it is a terrible thing to go through, and no one could know unless they live with it. I just wanted to tell you that everytime I reduce the dosage, I have about 5 really bad days,then it gets normal again. Normal for me is bad in the morning for an hour, then some pain all day. Maybe the first two days are ok when I reduce, but then for about 5 days it will not be good. As long as I go back to the same level of pain I was the month before, I'm not having to up the prednisone again, so I'm trying to maintain. I am self employed and am able to stay home if I need to. I feel that if I give in and up the dosage when the pain gets worse, that's just another month I will have to stay on the drug from hell. I know this might not work for everyone, but I've been able to do it. Also, a friend told me she took glucosomine chondroitin for fibromialgia, and it made her feel much better. I tried it, and...maybe it's a coincidence...but I've been taking it for 2 weeks, and the last 4 days have been the best I've had since this started 1 1/2 years ago!!! It's just over the counter Walmart stuff. Spring Valley brand. triple strength. 90% of the pain has been reduced, and the mornings are not good, but sooo much better. I'm cautiously optomist. We'll see. If it really continues to help this much, no one will believe it. Surely, doctors won't. Good luck, girlfriend. I hope you have a good day. If anyone out there had tried the glucosomine chrondroitin, please share your thoughts with us. Hi Betsy, I have not tried glucosomine chondroitin while on prednisone...but I sure will ask my rheum. doc when I see him. The ophthalmologist that I work for has a PhD in (pharmacology) sp? and he suggested taking gluscosomine when I first started the pred.....I am nervous about adding too many meds.....I am currently taking 800 units of Vit D, 4 calcium pills a day, coenzymeQ10 (builds up immune system) flaxseed oil, low dose blood pressure med, low dose zocor, Centrum Silver multi vitamin.....( the blood pressure and cholesterol all happened at menopause....and family history..yippeeee.) I just started thinking back about my experience with the tapering process, and as I recall each time that I tapered, I had several days of more pain and my mood was in the dumps.....didn't think much about it at the time. I will be prepared the next time and realize that this to shall pass........my goal is to get of this junk, the sooner the better. This is a new day.....hope all is well with everyone, Janet from California Janet, Something really good is going on with me. I'm just going to keep taking the Glucos. Chrondroit. and be thankful for whatever is making the difference. I have never since I've had PMR had 4 or 5 really great days in a row. Almost pain free after the morning pain and siffness thing. I am thrilled. Like you, I take so much stuff, and I just hate it. Prednisone. Synthroid, Actonel, allergy stuff, Centrum Silver, and very occasionally Darvoset if I can't stand it. Then, sometimes I take Previcid because all the others eat your esophagus up. If you decide to try the Gluc , wait about two weeks and see if you don't see a marked difference. I am so anxious to know if that's what made such a difference with me. Also, hang in there for those few days of pain, see if you see that pattern when you reduce. Hopefully, you will level out after that without going back up on the dosage. Love and thanks. I tried glucosamine and chondroitin a few years ago when my RA was first diagnosed (before PMR). It didn't do a thing for me then. Maybe I should try it in conjunction with the pred as I am tapering now. Must admit I am feeling sore today. My thighs are painful and my arms don't belong to me. I have an important meeting in London tomorrow so I will have to get up really early to "get going" before I "get going" to the station. So I hope I won't feel quite so sore tomorrow. Hope you are all feeling a little better today. Love Judi Judi, This PMR is so strange, everyone has different pain and responses to prednisone and other meds. Maybe it doesn't work for RA. Maybe you're right about taking it with prednisone. It would be worth a try. I hope you will let us all know if you try it. Like I said, this could be a coincidnece with the Gluc. Cond., I'm still reserving my opinion, and I may never know. I took it for two weeks, then all of a sudden things were much better. Today is my 6th great day in a row! Minimal pain and very little fatigue. I'm thrilled to death after a year of debilitating pain. I wish with all my heart it would work for you and everyone else out there with this hateful disease. Thanks for you post, and please keep in touch. Hi Lyn, Previcid is like Nexium as far as I know. They both heal the esophagus. Actonel and Fosomax are about the same, I'm sure. Both cause erosions. Isn't it awful how we have to trade one problem for another? Prednisone is the drug from hell...but I am most grateful for it. The pain was unbearable. Besides relieving the pain it has: grown me a nice, soft little beard (now I know what my brother would have looked like if I'd had one) made me look like a panda for a while, kept me awake almost all night every night since Feb., ruined my hair, loosened my teeth, grew 3 bizarre, round fat places at the base of my neck, given me "adult onset ADD" (can't keep my ducks in a row like I normally can), made horrible purple bruises on my arms and hands, and many other hateful conditions I can't think of right now, since I can't remember anything. Other than that, I have suffered no side effects from prednisone.
I wish you well, girlfriend. What is the prognosis for the esophagal problems Hi Betsy, God I love your honesty and sense of humour!! Thank You! You have described me to a tee as well. Only thing I can add is elephant hump on back of neck
The esophagal problem is chronic and I guess will be ongoing. I will try Actonal again with a glass of milk ( read that somewhere) Anyone have any other ideas ? Going to Melbourne for a few days and nothing in my wardrobe fits ...so a bit of 'Retail Therapy 'on the top of my to do list. Maybe Pred. has some benefits!!! Thanks heaps and great to know you have had some GOOD days and hope they continue X Don't take actonal with milk!!!!! The calcium in the milk binds to the active ingredient in the drug and it then passes through your system without doing any thing to your bones!!!!! I've been prescribed Bonviva which you only take once a month. You have to stay upright for at least one hour after taking it and you must take it with a good half pint of water. All these anti-osteoporosis drugs are very erosive to the oesophagus so you are warned to stay upright and drink plenty of water. As a rule don't take calcium supplements at the same time as the drug (see above) or any dairy foods within 2 hours of taking them. I had all this explained to me 4 years ago when I first took prednisolone. I also take 20mg rabeprazole to protect my stomach. So far so good. Hi Lyn Hope you get sorted with the GP. Be prepared for a hefty prescription bill as the Bonviva costs £25 a tablet over here! I'm grateful for once for the NHS here as I have a prepayment card for my meds. For £90 a year I get all my meds paid for instead of the £6.80 per item. As I have 5 regular meds a day plus the Bonviva (and antibiotics at the moment) I should pay over £40 per month! Hope you are having a good day today. Love Judi Thanks Lyn, I once was quite a vain person, but now I just shave about once a month and forget it. What would we do without a sense of humor? Yep,this forum is fun as well as informative and supportive. Lyn, Puffy, Knitwit, Margaret, TicketBoo, Judi, and others I'm missing are making it enjoyable. Don't know what happened to Georgianna. Are you out there? I had never done anything like this before, and was a little shy. When I first tried this forum it was pretty benign. Poor desperate people would post questions and no one would answer them. I was too scared. Like the cyber cops would come get me if I did something wrong. It's so good now to read the helpful and caring posts to those poor, bewildered, newbie souls who aren't as seasoned as we are in PMR. God is good, and he makes good people...well...sometimes. Good night all. I have an appointment in one week and a half. I think I am going to tell rhummy i want off the pred. I am just concerned that I have waited too long to just quit. I had better relief with cataflam (non steroidal)...kicked in in 20 minutes and i was about 85% of my old self. I could wait till the symptons got too excruiciating and then take another ----or not.....If this lasts years I would rather just be a mayrtar. I cant be a slave to any drug for years on end....I would worry myself worse than the pain. This thing has been bothering folks for many years before pred...I read one article that said the outcome of PMR will be the same with or without meds... Thanks for bringing up this thread up again. It is so interesting to read what eveyone else is doing in dealing with PMR. I sure wish there were more studies on PMR. I am now on 1.25mg of pred every other day. I hope to be off pred in the next week. I see my dr in the beginning of Dec and will have blood work done again. Will be interesting to see where my Sed rate and C protine will be. Last time it went up, but I felt better. I am still no sugar and 2,000mg of Vit C a day along with Mulit Vit, D, and B. I do take Ultrum a couple times a day, which helps. I have lost the 17# I gained when I went on Pred. Now if I could lose more. Had my sleep study and the Dr put me on Ambian at night. I tried the air machine and they want me to get one. Waiting to hear from the insurance. Don't know if I really want one. I think getting a good night sleep has helped me to have more energy. I still rest on and off during the day and am thankful I am retired. There is no way I could work and deal with this. Thanks to eveyone for posting. I look forward to learning more each day about PMR and how to deal with it. (5-Hydroxytryptophan or 5-HTP is a naturally-occurring amino acid, a precursor to the neurotransmitter serotonin and an intermediate in tryptophan metabolism. It is marketed in the United States and other countries as a dietary supplement for use as an antidepressant, appetite suppressant, and sleep aid.) I finally got up enough courage to climb aboard the boat. I am relatively new to this PMR thing, diagnosed in July, so found you all to be most helpful. I have tried twice to reduce the pred but both times had a massive flare up. Just finished with one that lasted 3 weeks and there was no good reason for that one. Sed rate was higher than when first diagnosed. Am taking a bit of time before I try again. I laughed when a friend who had been on pred said I would get chipmunk cheeks...I look like Deputy Dog. I have jowels. No hump yet but heck...I still have time for that one. The brain is still scrambled eggs from time to time and the stomach we won't talk about. I was wondering if anyone else was having trouble with mouth sores? Thank you all again for guiding greenhorns like myself through the maze. Welcome, Now that you mentioned it, I do get mouth sores. They just kind of come and go, all on the inside. What was your SED rate and how much pred are you taking? My Sed rate went up this last Dr visit. Geri My Sed rate jumped from the low 20s to 42 and I am on 20 mg pred. I get the sores mainly on the roof of the mouth but have had some on the inside of the lower lip and cheeks. If they are connected it has to be the pmr as I was getting them before the pred. Hi pgr555 I come from a small centre and we have no reumy so I was diagnosed by an Internist. After 9 weeks she sent me back to my current GP. Apparently there used to be a reumy come in once a month but I heard somewhere that he has not been well. Current GP suggested rinsing mouth with salt water and that seems to work quite well. Do not worry about people not liking you. Let the ones that matter know what is going on and you will be surprised at how they will rally around you. Before I knew that this was a side effect of pmr, I had people running for the hills when they saw me coming, especially my dh. Now that they know and I know what is causing the outbursts things have calmed down a lot. Good luck. I was thinking about getting tested for allergies....Nanaquilts..do you know if Soy ice cream is ok on a sugar free diet. I had a naturapath tell me it was....there is no refined sugar but there is cane juice....Sugar is the hard thing for me to forget about. Found this on a website... Patients who are diagnosed with polymyalgia rheumatica will likely be prescribed corticosteroids. Life Extension advises patients to take the following supplements to help prevent steroid-induced osteoporosis: In addition, the following nutrients that help protect against inflammatory events in the body or reduce the dosage requirements of NSAIDs and corticosteroids may provide some relief: Also, licorace has been recommended on several sites. Hope I am not repeating myself...I have found that I do not think very clearly. Folks, please find a good LMT and splurge for yourself. I have learned breathing and relaxing techniques and we do range of motion exercies and gentle yoga. Your insurance may even help you with it. If you get KRLN try to tape (or get up and watch) Lilius and there is another yoga show after that. I get it about 5:30 am (I tape it). I cant do half the things but the breathing and relaxing techniques are excellent...Some things yu can do while in bed in the morning (it takes me a long time to get up anyway...trying to throw the covers off is the worst sometimes) WOW - 9 grams for 1/2 cup....and there are 4 servings....and i ate the whole pint (except for 2 tablespoons at the bottom of the container so i wouldnt be so guilty)...there goes that. Getting off sugar is hard for me. I was looking for soy or something mayo as I make tuna and salmon salad a lot....it usually has some kind of sugar in it...I will get to the bottom of this.....! I was told no artificial sweetners except Stevia. This was from a Naturapath...I don't really like Stevia too much. I am going to the book store later today when i feel better and am going to look at the inflammation diet books and anything else that pertains..... Just a note about DHEA. It's actually a steroid itself, and is banned in Canada. It may not have the same side effects as prednisone (although it has some potential side effects), but it's possible that DHEA may increase the risk of breast cancer. I took it myself for a few months last year and found it helped me reduce my prednisone dosage, but with more reseach decided it wasn't worth the risk. My side effects from prednisone have been minimal although I've been on it since Feb 2006. Breast cancer can be fatal, PMR isn't! [QUOTE=smartie101] Found this on a website... Patients who are diagnosed with polymyalgia rheumatica will likely be prescribed corticosteroids. ... In addition, the following nutrients that help protect against inflammatory events in the body or reduce the dosage requirements of NSAIDs and corticosteroids may provide some relief: DHEA15 to 75 mg daily to start, followed by blood testing in three to six weeks to ensure adequate levels of this vital hormone ....[/QUOTE] Smartie...You really amaze me with the things you are able to find and I for one appreciate it so keep it coming. Like I said before, I have scrambled brain syndrome so find it hard to get it around some of the things plus I am not computer savy so get lost in here sometimes. I also found the article from Margaret in the UK really informative. The articles on pred are most scary and I am seriously thinking that after the holidays I am going to get off. I want to be able to hit the golf course in the spring. I'm really brave until the pain hits. Geri....I found your theory on sugar and vit. c quite interesting but because I restricted the sugar in my diet about 4 years ago when I quit smoking I do not know if this works or not. I do find Splenda is a good substitute and really like the whipped ice cream with no sugar. Ruth.....What part of the province are you in? I am in the Kootenays. Has anyone else been warned against taking certain nsaids with the pred. My druggist said that aspirin & tylenol were ok but not ibuprofen and Aleve. She mentioned a few others but I did not write them down so, of course, forgot. Before I talked to her I found out the hard way that Aleve was a no no. Woke up at 4 am with excruciating pain in abdomen. Have not taken anything else since. I hope my stuff is a starting point for people. I bought four books today and looking thru them at the store I am excited to read them. I really am blessed...in that I am retired, am in good health otherwise (as far as I know), have good insurance, and a good family. In all the stuff i have read i think that the medical gurus have let this disease catch up to them....over pass them. I have read so many articles (and i looked at old archived articles about it) and so many times I read "The AVERAGE age of onset is 70". Pota was concerned that he did not fit in the box the medical community devised. Don't let them put you in a box. They need to catch up with this thing. Younger folks are getting it and treatments for that age group need to be addressed. It is a sham to me that there is not something better to treat this thing with. And I have noticed there is no baseline....every doctor uses his own dosages and scheduling...sometimes leaving it up to the patient. Did you ever notice when Jane Pauly disappeared then showed up with a moon pie face? I googled her and I believe she had hives and was put on steriods and then became suicidal or depressed or mentally wierd....and finally she announces she is bipolar. I have decided I am going to be in charge. I am seeing a new rhummy doctor in another town next week. Look, if I was getting an organ transplant I would take pred. If I was 70 with PMR I would take pred. For some reason the age of onset has become lower. Pred is not a good option in my opinion for a disease that may be over with in a few years...you may have years after that (or the rest of your life) dealing with side effects of pred. I think it is just the pain that is hard to deal with. I used to drive a car with no A/C during my college years..it was so hot - just awful....At the end of summer it wasnt so hot anymore..I had gotten acclamated to the heat. I think I can do that with the pain. I am going to study inflammation, what it does to your body, and natural ways to look at it and overcome it. I will post some of the interresting things that are in the books...good luck all
I thought adipose tissue was fat, but just read that it
is the storage area for fat. ???? Not sure I understand
all that. I commend you for being able to lose weight
while on prednisone. I have been off for a year+ now,
and still have 18 pounds to lose of the 36 I gained
while on the drug. The first 15 went pretty fast, but I
seem to be at a plateau now. I am even walking more
than before, so thought that would help, but doesn't
seem to. It appears my legs are the only place to lose
weight. Haha. And I am hoping that some of the weight I
still have is muscle, as clothes are feeling a little
looser now. But I guess I REALLY need to cut back on
eating if I want to see the extra weight loss.
('')Other than that, anybody have any good hints to
help lose the weight?
Janet, I trust your taper will continue to go well and
that you don't have any increased pain as you lower the
dose. I admire your attitude about not letting it stop
you.
Hope everyone is doing better.
Reni Thanks everyone for answering my question! Seems we can either laugh or cry about our changing faces and bodies. Off to water aerobics tomorrow... should be a "whale of a time" Thanks heaps..
I am so upset about this, altho I should have known it was coming. So I have gone down to 6mg today and I will live with the consequences!
Sorry to hear about this...what mg of pred did you start with? Is it correct you have been on pred for 6 months? Thanks for sharing.Hi Smartie, I started on 10 and have been reducing in fits and starts with setbacks here and there where I reduce and then go back up for a week before going down again. Altho since I started reducing by 1/2 mgs instead of 1mgs, it has been better.
I know I will soon be paying for this 1mg drop to 6mg today, should have gone to 6.5, but I feel like a rebel at the moment! I have a rheumy appointment on 7 December - but anything could happen by then!
I have had a couple of minor mouth sores. They were all AFTER I started
on pred and I figured they were lowered immune system related, so it is
interesting that you had them pre-pred. Please tell your rheumy about
Seriously, I fnd the doctors know so little, I try to let my doc know all the
things that several of us experiemce because they don't know enough
about this stuff. For example, when I was having a lot of trouble walking
up stairs and having buttock pain, my doc wanted to blame it on old
back injury and was talkiong about surgery! I insisted it was PMR. When I
came on line, MANY people had the same symptom and i was able to go
back and talk to rheumy. She was surprised, but said she had learned
something from it. -- And I should say she is a very good doc in general!
I just think they don't know.
As far as pred and effects... I was on 20 mg for 3 months with no side
effects. Went to 20/17.5 for a week, then 17.5 for 2 weeks. Now have
been on 15 for almost 2 weeks. Side effects started on 15! Face is 4 x's
the size, gained a small amount of weight and people don't like me as
much Seriously, I am not as nice as I use to be... maybe its the power
of being the taskmaster!!!
take care all, pgrGood luck Nanaquilts with getting off pred next week. I'd be interested to know how you get on after the last dose. How did your tapering go for you?
Welcome Teedoff, sorry you had to take this boat, but welcome aboard. An please don't take too much notice of what I write, I am a REBEL at the moment!
Yes I have had mouth sores off and on since being on pred. Just
yesterday I found my tounge is bleeding when I brush it. We all know that
pred can thin the skin until even gentle bumps bleed. I wonder if this
tounge thing is a manifestation of that. Anyone else?
I am having a flare since about 10 days ago. Can't attribute it to anything
other than perhaps the arrival of the winter rain here in the NW. My osteo
often flares at the same time as PMR so the pain is encompassing. But so
far I'm resisting increasing from 6mgs.
Happy Thanksgiving to all who enjoy turkey day. I'll be giving thanks for
all who share on this forum.
GeralynHi Chico, I was on 5mg of Pred a month ago then I decreased to 2.5mg for a couple of weeks then went to 1.25mg for a day and back to 2.5mg for a week. Then I went to 1.25mg for a week and last week I did 1.25mg everyother day and Sat I quilt taking the pred. I really think the no sugar diet helped me as I said in another post. I also take 2,000mg of Vit C, then I take a B complex, a mulit Vit, and D. Today I was reading on MSN.com about food allergy affetcing all kinds of arthritis by Dr. Rob. Hope this helped.
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