Type 2 Polymyalgia Rheumatica

dottyjan

Member
Messages
11
Type of diabetes
Treatment type
Tablets (oral)
Dislikes
cruelty to animals; the import of rescue dogs from the continent; indiscriminate dog breeding.
For about 18 months I have had frozen shoulder in my right shoulder for which I was having physio. I am left handed. Last November I had cold, fever and sore throat and self-medicated in the usual way, i.e. paracetamol and sugar free Halls mentholatus and sugar free robotussin. got over it, thought no more about it, Christmas coming busy time etc. In December I woke up in middle of night with cramping pain at back of my upper right leg, and my hips hurting. It seemed to be sciatica, went to doctor who gave me some cocodomol. Which didn't help. Gradually my back, lower ribs, both collar bones and shoulder blades and my left arm started hurting worse and worse and I started to get more pains in my right arm and shoulder which seemed different from the frozen shoulder problem. A friend told me she had similar symptoms and it turned out to be caused by statins which I had been on for 9 years. I went to my doctor and he told me to come off them immediately and said it would take about a month to return to normal. He sent me for the CK Test but has not notified me of the Test result. He also said I should have the right shoulder operated on. Two days later I went for a final physio review and discharge pending surgery. This time I saw the top man in the Department and when I outlined the above he said that he believed I had Polymyalgia Rheuatica, PMR. He said I would need further blood tests to confirm but that it responded very well to a specific treatment - ~ good - then he told me the treatment was prednisolone, a corticosteroid. Oh dear! He said he was writing to my Doctor accordingly.

I am going to see my Doctor for follow up next week. I take 4 x 500g Metformin a day plus 1 Januvia. Plus 75 mcg levothyroxine as I also have hypothyroid. Since I started taking the Januvia last year my weight has come down, my control has improved and I have been working since Christmas to make it all even better. If I have to go on steroids I realise this will be a knock back this has somewhat upset me although I am normally quite a cheerful person. I like to keep busy but can barely lift my arms at the moment , getting up in the morning is a work of art which requires careful planning. Fortunately my hips and upper legs are stiff more than painful so I can still walk about. I am a widow, my only child works long unsocial hours and lives about an hour away. I have two dear little dogs which I got for company after I lost my darling husband nearly 6 years ago and I have to take responsibility for their needs. My 21 year old grandson lives with me but he also works hard, long unsocial hours and much as I love him, is as much use around the house as a chocolate teapot!

I am quite frightened by all this at the moment. It has taken me nearly two hours this morning to prepare a chicken casserole to go in the slow cooker, something - no pun intended - I could normally do with one arm tied behind my back. Any positive advice anyone could give me would be much appreciated and yes - I am going to nag my grandson for starters when he gets home tonight. My niece who has fibromyalgia tells me that the myalgias are often linked to the thyroid problem. Both thyroid problems and diabetes are endemic in my family (at least 9 people) on my late father's side. He died from septicemia , from a sore on his foot which travelled right up his leg, because he stopped taking his medication and ate anything and everything, knowing full well he was diabetic. Selfish old devil, he was. He refused to tell the doctor about the sore until it was too late. He knew what would happen, he swore his third wife to secrecy. I told myself then I would not subject my family to that so I want to not let my diabetes get out of control. Sorry if this sounds like an almighty whinge. I want an action plan so I can set goals and bepositive!
 

alaska

Well-Known Member
Messages
475
Hi dottyjan

I'm sorry to hear you've been diagnosed with Polymyalgia Rheumatica.

Are you taking a statin by any chance? -question retracted as I see that yes, you had been on statins for 9 years.

Whilst certainly not the only reason for bringing on Polymyalgia Rheumatica, research shows that there is a strong link between statins and the condition, so it may be worthy of consideration as a possible contributing factor.

The results of this study lends support to previous anecdotal case reports in the literature suggesting that the use of a statin may be associated with the occurrence of PMR. Further studies are needed to study the strength of the association in more detail and to elucidate the underlying mechanism.
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0041289

Wishing you all the best for being able to manage this.

Ed
 
Last edited by a moderator:
C

catherinecherub

Guest
Hi,Sorry to hear all you are going through.

The steroid treatment will raise your blood sugars but you have to tell yourself if you carry on without this treatment then your quality of life will be affected permanently.

Sometimes one condition has to take precedence over another for you to be able to cope on a daily basis.

You may be offered more diabetes medication or insulin to counteract the rise in blood sugars.

How long were you on the statins and how long is it since you stopped taking them?

I do hope that things improve for you.

Take care,

CC.
 

dottyjan

Member
Messages
11
Type of diabetes
Treatment type
Tablets (oral)
Dislikes
cruelty to animals; the import of rescue dogs from the continent; indiscriminate dog breeding.
Thank you both for your kind remarks. the article is fascinating. i have bookmarked it. I never thought that the statins could maybe cause the PMR. The physio said it often followed a 'fluey illness. it is nearly 4 weeks since I stopped taking them but my feeling is that if they "opened the door" just .stopping will not make things better. My Doctor has never issued test strips to type 2's but if he has to put me on insulin, I think I can pressure him to,
 

foxglove

Well-Known Member
Messages
209
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Spiders - especially the big black ones!
Hi Dotty, Sorry to hear of your pain and discomfort!
Personally I would never touch statins even with a barge pole!! The complications that have been caused to so many people prescribed them I quite unbelievable and there has been documentaries about it too.
Just to clarify.. "Polymyalgia" just means "pain in many muscles" and being a sufferer myself I can well sympathise with you and my shoulders are very painful too. I was given the advice to gently exercise them as much as possible as is necessary with all types of rheumatics and arthritis even though it does go through stages of being extremely painful and then eases off at times.
 
A

AnnieC

Guest
Hi dottijan
Sorry to hear of your problems hope you are sorted out soon. My husband was diagnosed with Polymyalgia about two years ago his started much the same as yours with excruciating pains in his shoulders and arms his fingers were swollen and numb and he could barely lift his arms the doctor gave him codeine pain killers which hardy touched it he told him to go back if there was no improvement it was getting worse and he started to get pains in his hips and legs as well. When he went back the doctors said he thought he knew what was wrong and he was sure it was Polymyalgia Rheumatica he said a blood test would confirm this and in the mean time he started him on steroids and said he would soon feel a very big improvement.
My husband said it was like a miracle within two days of taking them the pains had eased and he could lift his arms again and by the third day had practically disappeared and within a week he was totally pain free it took a few weeks before all the numbness in his fingers went. He has gradually lowered the prednisolone from the high dose he was on and now only takes 4mg a day any lower than that and he gets pain again He is 81 and the doctor said he will probably have to take the steroids for the rest of his life but he is happy to do that while it keeps him free of the pain.
He is not diabetic has never taken statins and has no other health problems
Good luck and I hope you get as much relief from yours .
 

dottyjan

Member
Messages
11
Type of diabetes
Treatment type
Tablets (oral)
Dislikes
cruelty to animals; the import of rescue dogs from the continent; indiscriminate dog breeding.
thanks, Foxglove,, the physio who made the ?diagnosis suggested I use the exercises given for my frozen shoulder for the other arm too, and he added a few all of which I am doing. Is that a bichon frise I see? One of my dogs is a shih tzu cross bishon (both are rescues) and despite being tiny dogs, when they start pulling on the lead it could not be described as a gentle exercise! Lol! Part of what keeps me positive is my determination that they should not suffer for my pain, and to keep their lives as normal as possible. AnnieC, I am going back to my doctor this afternoon as he now has the letter from the physio and I hope we can take this forward. I do not think having an operation on the frozen shoulder is a good idea until this is under control, what worries me is I am also due to have a cataract removal in my right eye on 7th March and I need to ask whether this op. should be deferred also. The left eye was done last October, before this happened to me. I want it done out of the way if possible but you have to be honest about changes to your health and/or medication before they operate.
 

foxglove

Well-Known Member
Messages
209
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Spiders - especially the big black ones!
Dotty, You certainly have a few things to contend with at the moment, don't you?!
The cataract op is quite simple and straight forward and I am surprised that it is not being carried out as a laser procedure which is the up to date method... and quite painless too. I had mine done by this method and it just felt like someone was tapping the back of my head as the laser was triggered and I was in and out in less than 30mins.

The picture is of a bichon fries but it looks so much like the poodle I had many years ago that had it's coat cut in that fashion so that's why I chose it as my avatar.
 

ShellyC23

Well-Known Member
Messages
169
Type of diabetes
LADA
Treatment type
Insulin
Dotty, I too am having problems with pains in my shoulders but up until now thought it was related to Ankylosing Spondilitis (AS) which I suffer from. I also take statins, steroids, thyroxine and insulin amongst other things. I have an appointment with my Rheumatologist in March so I will ask his opinion. From being a small girl my mother always said that it doesn't matter how bad you feel there is always someone worse off. On the days when things are really bad I try and hold on to this thought. Take care and I hope you feel better soon


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dottyjan

Member
Messages
11
Type of diabetes
Treatment type
Tablets (oral)
Dislikes
cruelty to animals; the import of rescue dogs from the continent; indiscriminate dog breeding.
ShellyC23 the physio said it was because the pain and stiffness were at their worst first thing in the morning that he was able to identify the pmr. I know what you mean about someone being worse off. My late husband had a dear friend whose only son is having treatment for an aggressive cancer and he is only in his 30's, and my brother in law, who is Italian, has a nephew in Italy in his early 40s in hospital with an aneurism which has left him in a persistent vegetative state. Anyone who is a parent themselves cannot but feel for the parents of these young men. Foxglove, I had the other eye done last October and shall be pleased to have had them both done so I can get some decent glasses - I bought inexpensive basic framed ones, as soon as I could after the first op, knowing they wouldn't be needed too long. I don't know how they did it, my face was wrapped up like a mummy. Perhaps it was by laser, and perhaps it was only 30 minutes, I didn't feel a thing but it seemed to go on for ever. why do you always want to scratch your nose when you can't? lol! Is the picture not your dog then? I tried to upload pictures of my two little rascals but wasn't very successful so I have moved them off. they are part of what keeps me going.
 

ShellyC23

Well-Known Member
Messages
169
Type of diabetes
LADA
Treatment type
Insulin
Dotty, pain and stiffness are worse first thing in the morning with AS too so I guess I'm going to give my rheumatologist something to think about at my next appointment


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dottyjan

Member
Messages
11
Type of diabetes
Treatment type
Tablets (oral)
Dislikes
cruelty to animals; the import of rescue dogs from the continent; indiscriminate dog breeding.
One of my sisters was diagnosed with AS quite some time ago. I don't really see much of her so I don't know how she is getting on with it. Our mum suffered from rheumatoid arthritis from when she was a child so perhaps there is some genetic link with this type of problem. One of my nieces has fibromyalgia. My doctor indicated that he would not arrange for a pmr blood test for me until after I have visited the shoulder clinic on 10th March as he had not received the promised letter from the physio. I wrote the physio setting out my current situation. He kindly telephoned me yesterday and confirmed the letter had been sent. He said he will resend it and copy it to me also. I said I felt that as my referral was for query surgery on right shoulder the consultant might not want to take a view on possible pmr and he agreed this was quite likely but said if I show the consultant the letter he might possibly give me an immediate referral to the rheumatology department. I do not think I can consider having surgery on my right shoulder which will put that side out of action for a while, if my left arm cannot be used properly. There is a level of basic living requirements which needs at least one arm working after a fashion. I had carpal tunnel decompression on both hands while my husband was alive and he came home from the office for an hour each morning to bathe and dress me and he made me breakfast and left me out a flask of tea and a sandwich for lunch - he was brilliant. I was as helpless as a baby. I am trying to think through the practicalities, really. I have had all the heavy shopping delivered for the eye op. next week.
 

ShellyC23

Well-Known Member
Messages
169
Type of diabetes
LADA
Treatment type
Insulin
Hi Dottyjan hope you got on ok yesterday at clinic. I have had a couple of back and shoulder massages recently and although the pain was horrendous and the bruises very impressive I do think there has been some improvement. However I have also reverted back to my "old faithful" anti-inflammatories after being advised by another consultant that they weren't recommended with another of my medications. It may be a combination of the two but I'm off to collect more bruises this morning. :)


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dottyjan

Member
Messages
11
Type of diabetes
Treatment type
Tablets (oral)
Dislikes
cruelty to animals; the import of rescue dogs from the continent; indiscriminate dog breeding.
Update: my right eye has been done and seems pretty good, still a bit fuzzy but with my glasses on I can see ok. Went to the shoulder clinic this morning and after being made to stretch every which wa,y was told I definitely need the frozen shoulder op and it is keyhole surgery, day patient, general anaesthetic (about 8-9 weeks time frame) and I should go back to my GP about the PMR. I am now armed with a copy of the physiotherapist's letter and I am going to see my doctor again next Monday so perhaps I can start getting somewhere. Can't book a holiday until I have a date for this and I would really like to go away this summer. As a matter of interest, ShellyC23 was it a proton pump inhibitor you were told you couldn't take with anti inflammatories? I had a similar experience. There seem to be a lot of problems among people I know recently who have medication conflicts. Its a worry.
 

ShellyC23

Well-Known Member
Messages
169
Type of diabetes
LADA
Treatment type
Insulin
Dottyjan the drug is a tablet called Lisinopril which is an ACE inhibitor believed to improve kidney function. To be honest though I've done without these for years and kidney function is stable, but GP thought they'd be worth a try. However I've recently had symptoms of Raynards in my hands and this is listed as a side effect. Not sure i want another addition to my list of conditions so I'll be discussing this with doc tomorrow. Hope eye continues to improve


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dottyjan

Member
Messages
11
Type of diabetes
Treatment type
Tablets (oral)
Dislikes
cruelty to animals; the import of rescue dogs from the continent; indiscriminate dog breeding.
Sorry I have taken a while to get back here but various problems in the family left me snowed under. I was on Lisinopril too and was told it was for blood pressure. As far as I knew there was no problem with my blood pressure and I was told "as a precaution". I was also given a prescription for aspirin "to help the Lisinopril". they do love dishing them out, don't they? I have not asked the doctor, I have just stopped taking the Lisinopril and the aspirins and at the rheumatology clinic they took my bp and it was fine. I know it is naughty but I will tell the doctor next time I see him. The doctor at the clinic said he doesn't think it is pmr but he sent me for the blood test and I am waiting for an appointment. He thinks my left shoulder is becoming frozen. He said he doesn't want me to go on steroids unless there is no alternative. I have a date for the op on my right shoulder now, 23rd June and my daughter is taking a week off work to give me tlc care after, wahey!!! I have also bought myself a blood test kit from Amazon as the doctor won't prescribe them and I am pleased to find my control is much better than expected. My highest reading so far has been 7.3, two hours after my evening meal. I am also managing my pain with one co-dydramol after breakfast and 1 diclofenac at bedtime. I am pushing through the pain to do things that are needful and a clean and tidy house has cheered me up enormously. And I have been signed off to get new glasses,both eyes are good now.
 

Prudence

Newbie
Messages
1
Hi - I have just been diagnosed with pmr after being in chronic pain since January. The treatment I received was fantastic. Got an emergency appointment with my doctor, he sent me for blood tests at the local walk-in clinic which we had done straight away. He then rang me the next morning saying he'd received the results of the blood tests and to see him that afternoon. When I went he confirmed pmr and said I was also deficient in vitimin D. He gave me a prescription for the vitimin D and also steriods. I couldn't wait to take them the next morning, cos it said 3 tablets first thing in the morning, and I was experiencing less pain by that afternoon. By the following morning (only 2 doses of steriods taken) the pain was halved. Thats as far as I've got so far, but I would not stop the steroids now and be in that amount of pain again, even tho they have side effects. I myself have moaned about the poor National Health Service but I must say they have been fantastic this time.

I thought you might find it helpful to know that the doctor told me that if you hold you're arms out to the sides and couldn't lift them up to your shoulders then this is a typical pmr reaction.

Keep smiling.
 

dottyjan

Member
Messages
11
Type of diabetes
Treatment type
Tablets (oral)
Dislikes
cruelty to animals; the import of rescue dogs from the continent; indiscriminate dog breeding.
Hi, everybody - and Prudence - I am smiling.:) Isn't it great to be able to roll out of bed again without 15 minutes of careful planning! I have now had the diagnosis confirmed by the hospital clinic, and have been on steroids for 2 weeks - what a difference! I have booked in for my diabetic review next week as I have been testing I bought myself some test strips) and I can see that the prednisolone is affecting my bg levels so I want to ensure my doc. is going to help me monitor this closely - I am spiking in the afternoon mostly rather than staying high all day, although today to my surprise I was at 3.7 this afternoon, when I had previously spiked between 10.1 and 11.1 about 3 times. However, the main thing is I have been able to get on with a more normal life and got some spring cleaning chores done which I had been putting off and I am feeling very cheerful as a result. I have come down from 20 mg to 15, now 3 weeks at that then down to 12.5 for 3 weeks, with a goal of 10 mg of prednisolone as a maintaining dose. The clinic doctor was quite clear and helpful in outlining the timetable for me,though I was a long time up there what with more blood tests and another x-ray. I am having pre-assessment for the frozen shoulder op. on 5th June and the op. itself on 24th June so a lot of back and forth. Thank goodness for the Google calendar. Thank you everybody for your interest and help and advice.