Wondering if new symptoms are related to PMR?

Bones, joints and muscles
1

Hi all ~

I cannot believe I am only now stumbling upon this site! I have been surfing the net for so long! I hope someone can shed some light for me!

Let me begin by saying that I am not the one with PMR - it is my 75yo mother. She is always amazed at what I can find out on the internet!

Mom was diagnosed with PMR after falling down the stairs about 6 years ago and breaking her leg very badly. They determined that she hadn't actually broken her leg when she fell but rather her boned literaly cracked and that caused her to fall! She was diagnosed with Osteoporosis and then with PMR.

It took the doctors a long time to get it under control because it is rare and we live on PEI, Canada...a very small population. There is only 1 other lady on the Island with PMR.

She has been very lucky over the past 6 years - only one scary moment when she began having double vision and we were scared she would lose her sight. However, they were able to get that rectified.

Here's where it gets confusing. On January 15th, my mom was with me and my kids shopping at the local mall. She suddenly began getting this itchy feeling around her waist. She assumed it would go away and that perhaps it was something she ate. The rash didn't didn't go away but rather continued to get worse. She was having trouble sleeping at night as well. She saw a doctor who prescribed her an allergy medication and checked her Sed rate...it was 17. The next day she woke up with a swollen hand that was paining. By 5:00 that day, both her hands were swollen and extremely painful and she was also experiencing pain in her legs neck and back. She went to Emergency where they ran some tests. They said her Seds count was 29. They told her it was her PMR flaring up. They increased her Prednisone to 30mg/day, gave her a Cortisone shot and somoe Gravol to help her sleep.

Through the night, the welts continued to increase - very itchy and sore. The swelling that had subsided came back again the next day.

By Sunday morning, she could not handle the itching anymore and the pain was not getting any better in hips and shoulders. She went back to Emergency. A different doctor thought perhaps it wasn't a PMR flare up but rather just a bad allergy attack (she has no allergies that she knows of). He did tell her to increase Prednisone from 30mg to 60mg/day for 5 days then to cut back. He prescribed something for inflammation and a cream for her itch.

I saw her last night - Monday - her joint pain seems better but her itch is still there - not bad after putting her cream on it but when that wears off, its back. Her hands are still a bit puffy and tender.

So that's her story! Sorry for it being so long but I wanted to include everything! She is just so confused now because she doesnt' know if this is a PMR flare up or an allergy thing??

Have any of you ever heard of these things being symptoms of PMR? She is concerned that if this isn't the PMR, that she shouldn't be taking such high doses of Prednisone. She's also heard from another doctor that her count of 28 that she had on the 22nd is not considered high...but falls into the normal range. I have tried to find out what 'normal' is but seem to be getting conflicting numbers....could you please tell me your thoughts on this? What do your numbers run? What do you consider normal or abnormal?

Sometimes I find that I can find out more information (and more valuable ) by talking to people who experience the same thing as opposed to reading medical sites that just seem to repeat each other but don't answer specific questions! Unfortunately my mother's family doctor is not what i would consider well-informed of this disease. She has not seen a specialist since her diagnosis either - is that something that should be happening?

Sorry for all the questions! I am just trying to find some answers for my mom! Thank you all in advance!

Cheers,

Donna

PEI, Canada

2

Hi Donna

Sorry to hear your Mother has run into problems. There are 82 listed side effects that I know off, some of them common, some not quite so common, some rare and some very rare. Itchiness and swelling comes into the less common category according to the website information.

However, on of the simplest things that can cause it - is the dye on the enteric coated tablets. Try washing it off and see what happens.

On what is 'normal; for ESR and CRP rates, it depends of age, height, weight etc. For example, my GP wants the CRP down into single figures. my Rheumy says 13 is OK because I am 5ft 9in and what you would call on the heavy side of life (maybe because of all the steroids = weight gain) My GP is unhappy with 20 ESR my Rheumy is happy with half my age. And in the UK it also depends on Hospital area you located in. So 'normal' I just do not know.

I would also ask that you Mother be referred to a Consultant Rheumatologist as well.

visit www.pmr-gca-northeast.org.uk and spefically look and download if necessary the BSR Guidelines issued June 2009 on the Treatment of PMR.

Do let us know how your Mother gets on and good luck, by the time you read this, hoepfully matters may have resolved themselves for the better.

3

Hello there I hope your mother is feeling better I certainly havent heard of symptoms like this It almost sounds like shingles !! It does seem very extreme to give her 60mg of steroid I have only heard of 60mg being given to people who have GCA It does sound as if she needs to see a Rheumatolgist I believe there are types of arthritis which give you rashes a sort of dermatitis but I have no medical expertise its just things I have come across while I have looked into PMR There are lots of side effects with steroids and perhaps long term use has affected her immune system A friend of a friend has recently had terrible problems with mouth and throat ulcers and his PMR wont go away so he has been on steroids long term What is your mothers normal doseage ?? It does sound more of a allergic reaction than what I know of PMR As for blood results !!!! A bit of a minefield I think I am great on under 5 on both ( thats where my Dr likes me to be) if I get around 10 I am a bit achy and get into the 20s and I know it !! (I am 61 and am on my 2nd bout of PMR Had my first one at 54 then 3 years clear then back at 60 ) Other people seem fine at higher rates and I wonder if we all individually have a normal level in the range and its the increase above that which effects us ? It is a bit difficult for you living in such an isolated place so a Rheumatologist sounds essential as I think when you have PMR you very soon get run down if you have anything else to go with ( even a cold or sore throat effects your blood results ) Try and go online and read the article on Polymyalgia on Tuesday by the television producer who had it Very informative Good Luck and keep trying I think most of us who go on this site have had a bit of a struggle and we have all found at times we have had to do our own research

4

Hello Donna and I'm sorry to hear of your Mum's suffering but at least she has a very caring daughter.

60mg of steroids would not be prescribed for a PMR sufferer.....that is the dose often given in the case of someone diagnosed with the linked condition Giant Cell Arteritis in order to protect their eyesight. On the other hand, it's possible that such a high dose would be given if they considered there was a severe allergic reaction going on.

A rash around the waist is quite common in shingles, which Mrs G has referred to. However, I have experienced shingles but did not have any accompanying joint swelling as in your Mum's case.

It does sound as though possibly more than one thing is going on with your Mum. Has she ever had psoriasis because there is a condition called psoriatic arthritis and it's possible to PMR to morph into such other inflammatory conditions.

It seems as though the advice of a good rheumatologist is needed to put your's and your Mum's minds at rest and I do hope you get a conclusive answer and your Mum gets better soon.

MrsO

5

Good morning ~

Well - my mom is still on 60mg of Prednisone...her family doctor is still away (but back today thank goodness)....

However, the results came back on Thursday from her ESR and it was at 47! We were very disappointed to hear this as she seemed to be getting better...but now wonder if that was only because she was on the high dose of Prednisone...? So she went back to Emerg to see if she should be doing anything else or in hopes of seeing someone who might be more knowledgeable. They only recommended she stay on the 60mgs and to see her Family Doc first thing this week....

I have found out that we do not have a Rheumatologist on PEI....so she will be referred to a doctor who deals with a lot of Arthritis, etc. He is also the specialist who sees the other lady here that has PMR.

The rash on her body is gone - however, the palms of her hands are itchy?

Mrs O - No mom has never had psoriasis but I will look into that as at this point, she is willing to look into anything! She did have shingles a few months ago and mentioned this to the doctors but they said it was not shingles this time...

I was talking to her nurse on Thursday as mom had gone out and she has my number for back up....so I had her check to see what moms ESR has been running. It typically runs anywhere from 8 - 15. Although each year there is an instance of it jumping to somewhere in the the 40s and the time it had flared to the point of affecting her vision, it was 73!

Anyway I agree it must be a case of 2 things going on at the same time...its just whether the 2 are related or not that is curious.

There are Rheumatologists in neighbouring provinces - both New Brunswick and Nova Scotia....would you suggest that she consider travelling to visit one? Or do you think between her family doc and the the other specialist, they should be able to get a handle on this?

I thank you all for your replies. I wish you were all closer to PEI as my mom would love to sit and have tea and chat with you!

Cheers,

Donna

PEI, Canada

6

Hello Donna Had been wondering how your Mum was Glad she is feeling a bit better You are in a difficult position where you live to get expert advise You dont mention her CRP levels ?? A lot of us with PMR can have relatively normal ESR rate but it is the CRP which tends to show how we are doing If they were concerned about her sight they must have been thinking of GCA I dont really have any knowledge of this but Mrs O I think is the one who will have the info as to how long you stay on a higher dose of steroids etc It is hard to know whether the rash is connected to her PMR or not have they considered a dermatologist as her hands are still itchy ?? My Dr asked me if I had had any other infections when my blood results were high recently as even a cold will effect them Sorry I cant be of any further help but I would have thought if nothing improves a visit elsewhere may be necessary as I dont think they would want to keep her on a high dose for very long Our best wishes to you both and hope you get some help shortly

7

Hello Donna - So, yes, it does seem as though the medics assumed your Mum had Giant Cell (or Temporal) Arteritis as she presented with vision problems and hence the very high dose of steroids. This high dose must be reduced slightly within a couple of weeks and continue thereafter but with careful monitoring to ensure that the ESR and CRP blood tests are returning to normal.

I feel that an experienced rheumatologist is essential in handling your Mum's present situation but realise that this sounds like a difficult journey for her. Perhaps you could give the doctor who is dealing with the other PMR patient a try and hope he is familiar with GCA. If you aren't satisfied then maybe the journey would be worth it for peace of mind for both of you.

Perhaps it would be a good idea for you to take along the \"Guidelines\" Mrs K referred to.

Very best wishes to you both and do hope you get some professional reassurance soon.

MrsO

8

Hello Donna,

I am another 75 year old Canadian in Winnipeg with pmr and osteoporosis.When I was diagnosed 2 years ago, my sed or esr was 90. It is now 30 which my GP says is normal. My CRP was 48 (should be less than 6) two months ago. I had tapered off and stopped taking prednisone a year ago after being on 5 mg for 7 months. Now I feel I am having a relapse but am in the position of having to convince a new GP since my other one has left. She is insisting on lots of tests. Fortunately my former rheumatologist was still around and on a recent visit he seemed to think it was mainly the pmr. He said most of us have several things going on. His report should be back to my GP this week and I am also going for a GP referred ultrasound for my liver because of one test that showed slight inflammation there. Back to the GP next week.

I have been on 10 mg prednisone and 3 Arthritis Tylenol/day since the end of December pending more tests - but I feel I need more. Especially in the morning I have a lot of pain in my right hip and calf and general stiffness and achiness in neck, shoulders, lower back, buttocks. Previously upper arms and hands but ok there for now.

Hope your mom gets more help soon.

9

Thank you again, ladies! Its so nice to share experiences and receive your valuable advise!! Mom had her appt with her family doc yesterday and while she was concerned, she also didn't hide the fact that she was perplexed! She is of the opinion that it is a PMR flare up but also possibly a reoccurance of the shingles and possibly an infection of some sort. So she is going to start decreasing the Prednisone - 50mg for 3 days...40mgs for 3 days...etc. I was a bit suprised that she opted NOT to do bloodwork as its been a week since it was done and I was wondering what her numbers are doing. Mom asked but the doc said there wasn't any point in doing them until her scheduled appt for bloodwork on Monday of next week.

Mom said yesterday was the first day she felt 'like herself' and the itching has basically disappeared other then the occasional itcy spot that hits...for which she just rubs some cream on and it goes away.

Mrs. L - I find it interesting that your doc says your count of 30 is normal...I thought up to 22 was normal....? Mom was at 28 when they bumped her Prednisone to 60?? But after reading Mrs. O's comments, maybe it was because she had had a vision scare a while back and they wanted to ensure that didn't happen again. Mom has been on various doses over the years but has never stopped completely. I think she's been on 1mg/day for the most part. How about you other ladies?? Have you all been on a constant dose or have you stopped taking Prednisone completely? Does the Tylenol Arthritis help a lot?

Mrs. O - I am not sure what mom's CRP number is..I know she has it written down at home so will ask her about it.... We are hoping she will get to see the specialist soon and if we are not happy with how he is dealing with this, then I agree, we should press to see a Rheumatologist out of province. I have 4 kids so would not mind a road trip with my mom!!! LOL

Thank you all again - I will be back with any updates!

Cheers,

Donna

10

Donna

In answer to a couple of your questions: I feel Tylenol Arthritis helps a little but not a lot. My doctor wanted me to try it temporarily instead of increasing the steroid. She wanted me to take more tests to rule out other possible reasons for inflammation.

Until recently I did not know the readings for esr. (My doctor said 30 was normal and two years ago mine was 90.) Somewhere on this site I read that there is a calculation for normal which is, divide your age by 2. Probably that would be the top reading for normal. I do think that your mother was put on a high rate of steroid because of her vision problem and the fact that gca is sometimes associated with pmr. I don't have gca and had a good report from my eye doctor in November.

Yesterday I had an abdominal ultrasound. Next Friday I have an appointment with my GP and will see what happens.

Has there been much change in your mother's bone density test since being on steroids? I was just diagnosed for osteoporosis this past year.