hi there I’m new to this having only been diagnosed with PMR a month ago and am on 20 mg pred and omeprozole and GP has just prescribed AA which I am due to pick up today. Inflammatory markers are down from first bloods a month ago but symptoms are only slightly better so GP is keeping me at 20mg daily. I’m 60 next month and am on waiting list for total knee replacement but consultant has deferred the op now that I’m on pred as he’s worried about post op infection.
I never had poor health until recently- 2 x Covid and 3 x jabbed. Any link?
reading chats I’m worried about putting on weight with pred and have taken on board suggestions re low carb diet etc. And the side effects of all these drugs scares me
Random question- family have brought me a tattoo for my 60th. My first tattoo and I’m not sure if I should with the infection risk? Any thoughts would be welcomed.
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I have to say that if it were me I would consider deferring that tattoo - there is always a risk of infection with the tat, however good the artist is, it is an open wound and there is also the risk of reaction to the ink, although that should be less with pred but it is difficult to forecast what a deranged immune system might do. But if you do go ahead, be very careful with the wound care.
There is no single cause of PMR - it is an accumulation of insults to the immune system over a lifetime and eventually one final kick is too much and down goes the camel's back. These insults may come in the form of illness, accident, mental, physical or emotional stress, chemical or environmental events - so that includes Covid and your jabs. Many people say that their PMR appeared after the fly or the shingles jabs - or having the flu or shingles. Many of us had never had either the flu or shingles jab or flu or shingles in the period before PMR appeared. A tough time at work, or a bereavement, or stress as a carer - all figure in people's stories. So yes, Covid or the jabs could be implicated - but so could the stress of the last 2+ years. Or not.
The reality of pred is mostly nothing like as bad as the image painted by some. It is a powerful drug - but for most of us it gave us our lives back and for some it saved their sight. All drugs have some side effects, some get some, some get next to none - most can be mitigated or even avoided. I lost the weight I gained while on pred and I was still taking pred at the time - could do with losing some more but that is nothing new!
Thanks PMRpro I was expecting that answer re the tat but good to have it confirmed. It was only when my ortho consultant deferred my knee replacement op that it made me think that a tattoo was also a risk not worth taking.Stress could well be a factor- 5 years ago having worked for 31 years at a college I left under a restructure and have since had 4 different jobs - all moves instigated by me. Ok in current job and hoping to see me through to early retirement but don’t need this health issue!
Infections in a joint are a whole different matter anf knees are more complex than hips anyway. In many patients wounds heal more slowly when on pred - I have a couple of interesting ones left from the winter. They are fine - but they would have rather messed up a tat and did take months to heal fully!!!!
I'm 70 and almost had a tat to cover up a very, very small tat that I've had since I was 15. I saw the tattoo person and he was being a bit dramatic saying how he could see this, that and the other looking good on me. I decided against it there and then as I thought about thinning skin and the wonderful little bruises that appear randomly. So I would agree on not getting one.
As I have said many times the experts just don't know. About time some really serious investigations started. Never even heard of this illness until diagnosed with it yet 1200 have it. That's a lot of people when you start to work it out
There are some serious investigations out there -and some funded by the charity -PMRGCAuk and it’s predecessor.
I’ll agree it’s doesn’t seem to be very well covered in most general medical training unfortunately -and doesn’t seem to filter down to a lot of GPs.
As we often say, it’s a disease that affects older people, it’s not normally life threatening, it’s not considered to be news worthy like childhood cancer etc so it’s doesn’t get a lot of publicity.
Doesn’t mean that a lot of people aren’t working behind the scenes though.
In the great scheme of things there are a lot of illnesses we have never heard of, nor ever will, until they affect us personally.
It is a debilitating illness, everyone who has it knows that, but unfortunately it’s not well known by the public at large….and I agree that makes life even more difficult.
There is info in the older version of FAQs regarding benefits etc if you need help on that subject - have linked… look at headings Attendance Allowance and Benefits -
That is as much as anything because it is considered to be well managed by corticosteroids. And for the majority of patients you aren't as disabled as with other conditions, it is self-limiting and burns out for most. The incidence increases with age - most women who develop it are/were already retired and if you are retired the benefits aspect is different. I certainly wasn't retirement age originally - but even with untreated PMR I never considered I should seek attendance allowance or anything else. A Blue Badge would have been nice - but I wouldn't qualify now even in the UK, I can walk too far.
"Never even heard of this illness until diagnosed with it yet 1200 have it"
Think it is few more than that!
There is a lot of work going on of one sort or another. But basic research within the autoimmune field is difficult - and without basic research a cause isn't likely to be found. Without a cause, it is difficult to design a good treatment never mind find a cure. But above all - MONEY. Who will pay?
Yep, been there… you just have to protect it the best you can (when you remember).
Still have marks on my right forearm from an argument with a radiator in a Spanish villa done 8years ago! Long off Pred, but still have reminders.
Actually a scrape of top skin seems worse than an actual cut - have had 3 replacement surgeries since coming off the steroids and they have healed perfectly fine.
Just to add to Pro's comments... I've had PMR for just over 3yrs now and seemed to maintain my pre-diagnosis weight for the first 12mths, but then over the next year or so, and despite eating my regular healthy diet, I very gradually began to gain weight till I was almost a stone heavier. I then altered my diet to low carb, not no carb and since Feb I've lost over half a stone!
I eat 3 healthy meals a day at regular intervals, so I rarely feel hungry, and I drink lots of water each day.
Had I followed a low carb diet from day one, I might not have experienced the gradual weight gain in the first place.
It's definitely not a 'given' that you'll put on weight and although for some people this will prove more of a challenge than for others, there's much you can do to slow this process down and minimise this particular side effect.
I started a low carb diet from the beginning as I have an underactive thyroid and struggle losing any kind of weight so this was a huge concern for me. It has definitely worked, I eat very very well, but no bread, pasta, rice or potatoes. The only thing I never quite understand on the Nutrition information is the Carbs being a certain number, of which are sugars being the lower one. Never quite sure if I don't need to worry about the higher one if the second one is pretty low. Also cut out salt and sugar in terms of any sweet things. there are websites that sell cakes etc that are low carb as well as low carb bread that states it is 1g but I am assuming that is the lower number of which are sugars..... arghhhh so confusing
I don't know how you manage just 20g then. Very clever. I get lost when I start looking at the numbers. And low carb websites only ever say net carbs - I have no idea what that means as I can't compare to the usual information you get.
Net is usually the total minus fibre. i only stick to 20g if I need to lose weight - no fruit, no cake/bread/icecream - they are very special treats. Salads and a lot of above ground veg are very low in carbs. Cheese, eggs, fish, meat - all no carb.
I confess to not having been at all careful since November!!! Haven't gained weight though, even at 15-20mg pred.
That's good though at that dose. I have got to 5mg and no idea what to do now. No guidance at all. So decided to stay at 5mg for a month and then do your super long reducation over 7 1/2 weeks by 1/2 mg and see what happens.That's if I can stay awake. The deathly fatigue is overhwelming at the moment.
Yes, I know what you mean. I am just careful and have never eaten so much cheese and yogurt in my life!!! Actually I rarely ate cheese before this, but know the value of fats if you aren't going to be eating carbs much.
I unfortunately am also on statins for high cholesterol, so I'm supposed to keep my saturated fats at a minimum too. I do eat more cheese and yogurt now but it's so hard trying to find the right balance!
Yup. Pre diagnosis I also had a stiff liver it seems. Had a biopsy but all OK.Another area where they found 'nodules' - lungs, liver, parathyroid, colon.
a year later and I no longer have a stiff liver and the fatty liver levels came down, so clueless as to what all that is about. It was the liver guy who told me about vsl#3
Hi, re the AA have you had a bone density scan to see if you need it and we’re you prescribed vitd3/calcium tablets. My bone density scan showed very mild osteopenia and the last one showed normal bone density so I haven’t taken alendronic acid
I don't have any ostoporosis issues but still put on alendronic acid, calcium tablet and told to drink a pint of milk a day which I used to years ago. No problem doing this but it will be for 5 years
Pred can cause a weakening in your bones, but not everyone needs AA.
Many find that VitD/Calcium supplements are sufficient which is why we advise requesting a DEXA scan to check how your bones are before you embark on AA.
Why add in another drug if it’s not really required.
The drinking a pint of mik a day is rather old-fashioned advice! A litre lasts me 4 days I think. No AA, no calcium supplement for several years now as it caused more trouble than it was worth but plenty of vit D instead - and after more than 11 years of pred my bone density has hardly changed. It isn't inevitable.
It is a good source of calcium - but there are loads of others. I could no more drink a pint of milk a day than fly! Nor is it necessary - luckily for vegans and the lactose intolerant! Vit D is even more important - and while you get vit D from milk in the USA as it is added, it isn't in the UK and Europe.
It is rotten when you have always been healthy to get an illness like PMR. As the others say I personally would postpone the tattoo. My orthopaedic surgeon wanted me at zero steroids for a hip replacement but we agreed at 5mg in the end. It will be interesting what your surgeon says. Personally I would not take AA unless it was proved I needed it and after I had had a Dexascan. Also I take enteric coated pred so never had a PPI such as omeprozole. Your GP seems to be one of the sensible ones, unlike mine! I went to a rheumatologist privately in the end as my GP said I had a virus. The rheumatologist then wanted me to reduce as quickly as possible from 20mg to 10mg. I am sure that is why I have had problems ever since.
don't risk the tattoo. why not get a temporary stick on tattoo, then you can change it whenever you like. Stick to the NO/low carb diet and you won't put on weight or get diabetes.I needed no carbs to keep weight steady.
Prednisone is a wonder drug and controls our symptoms brilliantly.
It does thin the skin...perhaps the family funds could buy you a wonderful extravagant skin cream.
I personally wouldn't go near a tattoo - I understand that the inks contain toxic metals which can really screw up the immune system. In any case the pred seriously compromises the condition of the skin. Steer well clear imho!
Morning TBB I have nothing that I can add to the comments and advice already made/given. Just to add that the possible side effects of Pred are just that, possible not definite. It can and does affect individuals in very different ways. I'm over two years into this journey and tapering from 5mg to 4.5mg and have been very lucky with no noticeable side effects at all. Take care keep your tapering slow. For me, going from 5mg to 0mg will take an absolute minimum of fifty weeks, assuming everything goes smoothly and given the uncertainties of PMR that is a big assumption.
I think a tattoo would for me anyway just not be with the risk involved of getting any sort of infection. We have enough health problems without adding to them.
I personally would not go ahead with a tattoo just now.Regarding your knee replacement, I also had to come off prednisone before my first hip replacement September last year.After op was back on prednisolone as I was struggling with osteoarthritis,rheumatoid and pmr.I had previously came off pre d in March 2021 had reduced to nil.Unfortunately pmr came back weeks later and at my appointment in July my consultant restarted me on 20 mgs pred short course to reduce and finish before my op in September.My second op in April I was allowed too stay on 5mg pred.I had to have steroid injection in my shoulder in February due to pain from pmr.I had second op took longer to recover this time my skin was thinner and bled when removing dressing.It is down to surgeon regarding prednisolone.I have had both knees replaced years ago it is a bigger op and takes longer to recover.I wish you well and hope you don't have to wait to long for your operation.Good luck in your pmr journey.
Thanks Bella, my ortho consultant wants me down to 5mg before he’s prepared to operate and he’s seeing me again in October. From what I’ve read on here there seems little chance I will have tapered to that dose in a few months. I wasn’t looking forward to the knee op anyway but PMR has certainly thrown in a big spanner! Tattoo is definitely off - I wasn’t really keen on that either so PMR has saved me there!
While I DO get why they want patients off or at least on low dose pred, it is a mixed blessing: if the pred is too low you will have a PMR flare and be unable to do the absolutely essential rehad post op. It does depend very much on the surgeon - so it may be worth shopping around.
Yes, I struggled at 10mg and then at 7mg, now 5mg so just have to wait it out.
You are the most remarkable story to be honest. I have read everything you have written since I joined and you have had way way way more than anyone should have and managed to keep on top of everything and coped remarkably well. I guess your medical knowledge has helped you understand, but still, a walking miracle I reckon!!!
That's very true with people assuming you know things.I come from a family medical background - both parents, sister, uncle, cousins, niece etc People assume I know things when I absolutely don't.
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