Once you get used to low carb it becomes really quite easy - our tastes change a lot. I hate sweet things now!
JUST PMR EileenH?! JUST? Maybe you’ve never suffered the unimaginably intense & debilitating joint pain & stiffness that PMR can create rendering someone unable even to stand up or move. I have & when I read what you wrote “just PMR” I want to scream at you, I won’t of course. I PRAY that you NEVER go through the devastation that PMR can wrought on a human body & the weight gain & other painful side effects of LONG TERM use of prednisone that can take YEARS to safely taper off from...YEARS Eileen not weeks or days but YEARS.
Thanks for sharing your experience Marla ❤️ My weight gain? - 30lbs 😢
I’ve JUST begun with the cramps in the last month and I’m anxious to see what suggestions you get 👍 If you’re near the Philadelphia PA area I can give you my docs contacts if you want to research her background . I’m currently on a monthly infusion of Actemra and a daily 2.5 mg dose prednisone.
Take good care Marla
Now I just know you will take the huff at what I am about to say and before I start I will say welcome to the club none of wants to be in. You will get support and advice here which I hope will help you in your PMR journey.
However ... Get off your high horse barbara. Knowing some facts is a good start before attacking anyone like that. You have screamed at me - you used capitals which is taken as shouting in social media. Obviously you are new to the forum? Yes, on checking I see you joined an hour ago. This post is over a year old and you will note that no-one else was upset at me saying "just" PMR - and also note that I used quote marks for the "just".
I used the term "just" PMR as opposed to GCA or inflammatory arthritides in the sense "Is it only PMR or is there something else going on?". PMR isn't the disease - it is the outward expression of an underlying disorder. In our case on this forum the disorder is probably an autoimmune problem creating the inflammation but there is a range of other things that can cause it including forms of inflammatory arthritis and some cancers just to name 2 areas. I was replying to someone who has had "PMR" for some time and has been unable to reduce below a dose that suggests that this possibly isn't "just" PMR, there could well be something else causing the symptoms. And I suggested as much. That is all.
For your information: I have had PMR for over 14 years. I still have PMR. I still require pred to manage the symptoms. For 5 years I was not diagnosed and never treated - I was fobbed off with "your age" and a load of other excuses because I was realtively young and my markers (ESR and CRP) were never out of normal range - even when I was immobile, couldn't toilet myself or get up off the toilet without great difficulty, crawled up the stairs on hands and knees and was confined to the house or where I could get to with the car which was parked outside the door. If I had to walk - I had to go home. I couldn't stand to iron or prepare food - not least because my hands were badly affected and holding things was difficult. Luckily I was freelance so was able to work - I only had to get from bed to chair in front of the computer.
In fact the markers were raised for me, but not to above the top of normal range. Eventually I worked out from internet research what it might be - not only the GP but a rheumatologist hadn't helped. The second rheumy was pretty useless too - but did give me pred which gave good symptoms relief after less than 6 hours.
I have "met" thousands of other PMR patients through the forums and have also "seen" every variant of PMR there is as well as cases of GCA that have led to irreversible loss of vision because of poor diagnosis skills on the part of doctors. For the last 10 years I and a group of other women who "met" here and went on to form PMRGCA charities have worked to help prevent this unnecessary suffering.
So you see - to be shouted at like that is rather hurtful. Because you are 14 years too late - I have crawled the crawl too. And now spend some hours on the forums every day trying to help others. Perhaps you feel I shouldn't bother?
Hi, I am new to all this and still going through all the tests to confirm my diagnosis. But it seems I have the two linked Auto Immunes namely GCA Giant Cell Temporal Arteritis and Polymyalgia Rhumatica. Although at this stage the PR has not been linked to the former GCA by my professionals. In my case however a low dose of Valium was prescribed to relieve the symptoms of very strong shoulder cramps with severe pain. This has very degrees of success. Linked to these also are cramps in both my fingers and toes. I have spent a week in hospital attempting to get over the side effect of mass doses of Steroids which have caused a mass swelling of fluids in and around my lungs heart and all the other bits that like to join in namely legs and ankles along with the resultant pain. I am now on a reduced dose of the steroids 25mg per day down from 75mg per day and have been dropping at the rate of 12.5mg per fortnight. Unfortunately this has proved that the drug was not successful as all previous symptoms are just returning, severe pain regularly and flare pain occasionally. So all the wonders of the cure with a full return to the cause. Not happy. Along with that has also come the mass pain in my shoulder opposite side to the GCA along with the Hand and toe camps to the same side as shoulder. I am putting this down to the Brain controlling opposite sides of body. Back to your problem, I have added vitamin C daily and Banana a day high in Potassium. This seems to be controlling the side effects but also require the chemical treatment of Diazapam "Valium" to relive the muscle spasm of the shoulder and it may also be helping with the Finger toe cramps, but I am unsure on this. You have my sympathy as I know how debilitating it is but still hold out hope they can find another method to get rid of or control both my GCA and PR.
Wally71
Prednisone is not a cure for either PMR or GCA. It only controls the symptoms by calming the dangerous inflammation which causes pain and in the case of GCA possible loss of eyesight. A rapid reduction in dosage is likely to lead to a flare of the disease, and this is what appears to be happening to you. You need to taper much more slowly, and only after the initial symptoms have been properly controlled. It is important to reduce as soon as you can from the high GCA dose, but not before you are sure there is no longer danger to your eyesight. I haven't heard of having to taper by more than 10 mg even from the highest doses and by the time you approached 40 or 30 mg it would have been wiser to stay on the new dose for a month before a further reduction. The lower you get the slower you should go, so no more than 10% at a time.
There's good reading on this page. Have a look at the Bristol Paper:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
I suggest you post this as a new thread - more people will see and reply to it then as this is quite an old thread.
To add to Anhaga's reply - the pred never did or could "CURE" GCA. You start at a high dose to reduce the inflammation caused by an underlying autoimmune disorder that causes inflammation in arteries as quickly as possible since it is potentially a threat to vision. Having achieved that the dose of pred is reduced in stages to find the lowest dose that manages the symptoms as well as the starting dose did. But to reduce at more than 10mg at a time is too fast, even at the highest doses and, as you have found, makes it all to easy to overshoot the dose needed at any given time. GCA is very active for the first 6 months - a study in London found evidence of active inflammation even after 6 months of high dose pred. Flares are very common in GCA for the first 18 months - and almost always due to reducing too far and too fast. To reduce at the rate you were told is asking for trouble. In fact, the fact that they haven't linked PMR and GCA suggests to me that they may not know a lot about managing GCA. Where are you?
I am one of those strange individuals who takes advice from trained medical practitioners licensed to operate in my country. I have to admit that diagnosis of the disease has taken much longer than expected, mainly because my information to my GP did not have the "Classic" symptoms. This led to a delay in getting to the right specialist with further delays in getting appointments. All this time the symptoms grew and manifested them selves into the more classic signs of GCA. All this time I was researching via Google possible symptom/disease correlation. GP's and specialists, love this format of information. I also looked at several forums as to who what where were suffering similar/same as myself. The one thing I discovered was, many more people than I first thought had GCA. It is now over 6 months since I first noticed the "earache" Then the lower jaw swelling. Not what you would call Classic GCA, so hence the delay in getting to the actual problem. I was a bit gob smacked when I found that a delay could mean non reversible blindness. To this end I pushed harder to get an answer, which at this late stage I am still waiting for the biopsy result, which should be in the next few days. There appears to be some concern that my little backwater may not have the specialist expertise to look after a disease of this nature and that the local Doctors may all need refresher courses. Rest assured the facilities here are excellent along with the doctors, the pathologists and even the GP's. My reference to Steroids being a cure was just my slip up and I do know it is not a cure, but just a lousy tool to alleviate some of the symptoms. Which in itself can actually be worse than the disease long term. So to this end I thank everyone for their advice given so freely, from experienced people. But I have to say I believe I will be led by the professionals who have at the least a handle on my general health as well as the current problem plaguing me. Kind Regards Wally71
Eileen Thank You for your advice but the PMR symptoms came much later than the GCA final diagnosis, this is the actual delay. I have had for many years now several shot discs in my neck and this has caused many bouts of muscle cramp in my shoulder. So it wasn't linked to at that time an undiagnosed illness. I am located In the Lower Hunter Valley area of NSW in the City of Newcastle. The Main hospital of seven is the John Hunter hospital and it draws patients from all over Northern NSW as the main Teaching Hospital to Newcastle University Medical College. On Campus also is the now world renowned HMRI. Hunter Medical Research Institute. Leaders in many facets of research and cures of all forms of ailments. I am fortunate that these facilities are at hand and they have a good knowledge in managing GCA. Cheers Wally71
I wish you joy - they don't appear to have done too well yet.
Have they told you that the biopsy is not 100% reliable? If it is positive there is no question, you have GCA. But if it is negative it is pretty meaningless - it only means that they didn't find the cells they were looking for. Not that it is NOT GCA - and then you have to make a clinical decision.