I've just been told i have PMR, after two lots of blood tests, and am responding well to the steroids, on 15mg a day. Its all come as a bit of a shock though, as initially I had gone to the dr with a bad back and some sciatica in right leg, and thought it was getting worse as i was getting such pain and stiffness in back of head, neck and hips and thighs. So I'm leaving the back issue for now while i deal with this. I am feeling less stiff and painful which is good, but my moods are up and down, and i have now been given another two lots of meds (Adcal and the acid one that you take once a week and can't bend over or lie down for at least 30 mins!) . I am not used to being ill, I have always considered myself to be fit and healthy, always tried to exercise regularly, and never been on long term meds ever (lucky I know), and i am only in my 50's! Is anyone else out there got PMR in their 50's? I have read that the average age is 72. I know that the cause of the illness is a bit of a mystery in the medical profession, but i think mine was maybe brought on by stress as the last 18 months or so have been bad for me. Also, i think i am feeling a bit worse today with fatigue and an emotional dip as i was so stressed at work this week (I work three days a week). I might take up yoga if i can do the exercises and get up again, ha!
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Hi Lonsdalelass. You have come to the right place for support and guidance as you begin your PMR journey. This is a very active site where someone will always respond to posts day or night! Have you had a DX scan?
A lot of us wouldn't touch Alendronic acid unless a scan confirms Osteoporosis. Even then some of us still wouldn't take it. Others will be along shortly but please do a bit of research before going down this road.
I also work part time and it can be a struggle, however I have the luxury of flexi time. What do you do?
Thanks for replying Marilyn1959. Whats a DX scan? Do you mean a bone scan? I asked the dr about having a bone scan and he said not until about a year has passed. To be honest, although i do have the tablets, I am not keen on taking them because of the risks of damage to the gut....the last i would want is an endoscooy!!!! I did ask him about the possibility of an injection instead as a friend of mine had told me to ask, but i knew the answer would be no as its expensive, he said i would need to try the tablets first! Maybe i should ask for a referral to see a rheumatologist? My husband did ask the second dr I saw (I have seen three!) but she said maybe in a few weeks once we had started the treatment to see how it went. As it does seem to be working I may not get one.
Re stomach - ask for gastro resistent pred then you won't have to have Omeprazole tablets to line the stomach!
I was in teaching for 37 years. Don't envy you the task, even part time, with PMR. I am still in education, but am in charge of my own diary. So I am very fortunate. I work mainly afternoons / evenings when I can, since I am soooooo slow in the mornings before the pred kicks in.
I am 59, diagnosed at 57 but think I had PMR lurking from age 50.
Yes, I am wondering if I did too now!! I am taking lansoprazol (not sure if that's the right spelling) for my stomach, the doctor didn't offer me other steroids like gastro resistant ones, I didn't know you could get them. Are they still called the same thing....prednisolone?
If you are on enteric coated pred have you tried taking it before bed? It can take up to 7 hours to be fully absorbed so takes ages to work if you take it in the morning. Taking it before bed should have it working in the morning.
I did take it in the evenings, but my Rheumy went ballistic. He has never been so emphatic before or since, so I changed back to mornings. It is ok. If I have a rare morning appointment I get up very early and take a mixture of coated and uncoated, so that it kicks in sooner. Thanks for your concern.
Economy with the truth seems called for!!! He isn't entirely correct in this case...
One form of prednisone was designed, in collaboration with rheumatologists, to be taken before bed so it released at 2am and the peak in the blood was reached at about 4am and morning stiffness was better managed. Rheumies who are able to prescribe it say it is terrific (so do I, I take it!). If you take enteric coated at bedtime it will take at least as long to reach the peak - and is much cheaper.
Slippery elm worked for me when taking prednisone. It is a powder that thickens when you add water to it. I would prepare it weekly: 1 tsp. with a little water in a jar. It quickly thickens so then more water til the right consistancy - store in the fridge.
Taking pred. at 2am was right for me as it was not having any effect at the usual breakfast times. Just a little food ie yogurt, half slice of bread, and a spoon of slippery elm to assist taking the current dose of pred.
Hi,was 52 when diagnosed, 2 years later on 7mg trying to be brave enough to taper to 6.5 😀. This is a brilliant place to find answers never be afraid to ask there’s always someone who will know the answer
I’m a teaching assistant and I work full time. Some days are better than others but I think the children keep me going! I work in year 3 so they are only young. It would be a different story I’m sure if I was a teacher ☹️ I find I collapse in the evening and the pain reappears. What about you?
I do teach, mainly with year 3 - 6 children, in Learning Support so the vast majority of my teaching is 1:1, but i do have some classes to teach in the Senior department of the school which entails a lot of marking and prep. There is a lot of paperwork with all the assessments,which bogs me down a bit, but as you say, the children do normally keep me going, and although physically its tough to keep going, having my mind kept busy does help to get through the days. I couldn't work full time like you, it would be too much. As it is, after 3 days I am done in. I was admiring the energy of one of our teachers the other day, who just didn't seem to stop, and was still happy as larry, and I'm thinking 'how does she do it?' I tell myself that would have been me a few years ago, but not now! She is also younger, may I add!!!
I was diagnosed at 56 - about to have my year anniversary with this ridiculous disease. Currently taking 9 mg of pred every day, and supplementing here and there with advil (ibuprophen) or tylenol to mask pain if I don't want to take more advil. I also pop the occasional 750mg of Curcumin/Turmeric (it really works, but you have to take it with food), or when I really overdo it, a leftover meloxicam from an old knee surgery. Don't take opioids, of course - they won't work.
One in 133 people over the age of 50 get this crap - and I had never heard of it before I got it myself. Luckily, my doc (GP) has six other patients with it - his patients, like myself, tend to stay with him for decades, and so we've aged along with him. He spotted the condition fairly quickly, and I'm really glad not to have any other conditions that go along with it. At least not so far.
There are a lot of tips and tricks you will learn from this board for managing the disease for as long as it's with you - the average is six years. Kate Gilbert wrote an excellent book on coping:
Thanks for that. I am also 56. Reassuring to know people younger than the average age are actually out there with this PMR. Yes i actually do have the book by Kate Gilbert, and read it in a week! I even took it with me to the drs yesterday (but didnt take it out in front of him in case he thought i was telling him his job!) But i mentioned it to him, he didnt ask me anything about it or show interest, i expect he would have hundreds of patients to see that day. I admire your courage in taking extra meds, but I'm a bit of a wuss really since starting the pred and am steering clear of the supplements i was taking before getting this.....turmeric being one of them, with hot milk and black pepper. I've also stopped the omega three fish oils now since the dr said I would be getting enough Vit D with the Adcal that i started yesterday. Apparently, too much Vit D can affect the steroids he says. I am sticking just to what the dr has ordered for now, but now in a dilemma about the acid one. I am spinning a bit with what to do for the best!
And welcome, Adcal - yes good; AA - not unless you really need it, so request a DEXA scan first to ascertain if absolutely necessary.
You are on the younger end if the spectrum, but by no means the only one in their 50s; the average of 72 needs to be revisited I think, I would say average is nearer 65!
Stress - yes definitely a factor!
Gentle exercise yes, and you need to advise work about your illness, there are lots of things they can do to help. You can still work, but it’s going to need some adjustments on all sides.
Hi, thank you for your reply, you are the second person to suggest i ask for a scan. I presume you mean a bone scan? Do I go through my gp presumably? He has already said I would likely get a bone scan in about a year of being on treatment, so he won't be keen on doing this will he, I am going to have to push for it perhaps. In the meantime, while I wait for an appointment to come through, would I just leave off the A Acid tablets? Yes, I have informed work, and have decided I need to be very clear in telling them what I can and can't do with regard to stress levels; I have always been very accommodating over the years with taking on roles and duties and have worked there a long time, but now feel I need to put me first. Thank you.
Do not take any osteoporosis medications without knowing you need them. They have so many potential bad side effects you have to be in really bad shape or potentially heading for really bad shape to justify their use. It is possible to maintain bone health, even while on steroids, without using drugs.
New Rheumy has taken me off Adcal. Previous Rheumy insisted on four tablets a day. Am thinking of K2Mk7 and PMRpro has mentioned your name. Should I take it?
I'm not medically trained. just another patient. I've been taking a Vitamin K2-7 supplement for about three years. I believe it has helped my bones improve. Certainly my teeth aren't as sensitive as they used to be and I think that may be a sign that the jawbone, which seems particularly sensitive to bone thinning, is stronger now. I haven't heard of any reason why a moderate dose of Vitamin K2 would be harmful. The only issue might be for someone who is on a warfarin type blood thinner, in which case you should check with a pharmacist (doctors are, I hate to say, unlikely to have even heard of Vitamin K2). This form of the vitamin does not have as much of an effect on blood as Vitamin K1. I take two doses a day, 100 mcg each. I did lower the dose to one capsule a day, but my teeth started to get sensitive again. These things take a couple of months to show up. So I doubled the dose again. The only "official" dosage I've heard of is I think in Australia a dose of 180 mcg per day is recommended, so what I take is not much more than that, although my bottle says to take only one capsule a day. There is also a spray, apparently, which is better absorbed. I haven't tried that yet, but am thinking of doing so when my capsules run out.
Vitamin K2 helps the calcium get into the bones where you want it, so it won't settle into organs or onto the walls of blood vessels where it can cause harm. Vitamin D can't do that. Magnesium is also important for proper calcium absorption, and you can get that through food and the occasional soak (even a footbath) in Epsom salts if you want to avoid taking yet another pill.
Vitamin K2 is a fat soluble vitamin so should be taken with your meal, or at least with something which contains some fat.
Thank you for your message. I am not on warfarin so think I will order some and might just have a quick word with the pharmacist when I next collect my prescription.
Do you know why your Rheumy stopped the Adcal, as normally vit D and calcium is recommended for anyone in long term steroids? It just seems a bit strange to cancel them.
Previous Rheumy insisted 2 years ago on four tablets a day. New Rheumy (delightful man so different) said they were equivalent of two litres of milk. He took x-rays of spine,pelvis,knees and all were good. Because of my age a scan had been refused.
Which form of Adcal was it? There are two sorts and the caplets are a lower dose and are taken as 4 tablets a say. The ordinary stuff is higher dosed tablets - with approx. double the dose per tablet. If the 2nd rheumy thought it was the higher dose stuff you were taking 4 tablets of he was right - but not if it was the caplets.
You were on the 4x daily lower dose caplets - and he probably mixed that up with the chewable stuff which is twice the dose so you only take 2.
I didn't register the x-ray comment - if you can see osteoporosis on an x-ray it is BAD!!! There is an assumption that anyone over 75 must have poor bone density so they restrict access to dexascans - I know 2 ladies of 80+ whose bone density is probably better than mine! Too many assumptions...
I have suffered severe pain in my legs for over two years then suddenly a couple of weeks ago I bent over slightly and could not move as it went down both legs. Did xrays as he thought spine might be crushed. Gave me a cortisol injection and crossed his fingers.
At one point I was sure I had PMR from researching symptoms but it has not been confirmed only GCA. Perhaps I should call the Rheumy nurse and sort Adcal out.
And HAVE you got a vertebral fracture? I had similar problems in the spring - and it was entirely muscular in origin making sacroiliitis worse. The first assumption was spinal fracture - no sign of it at all. But it was still agonising.
Even four caplets of 750 mg per day is a normal sort of therapeutic dose. Two caplets would also be fine, especially for people without risk factors like taking pred. Possibly a Vitamin D test would have been a more useful test than the x-rays, if they are concerned about costs. If your D level was high then it would justify cutting the dose.
I was taking 2000 mg a day per doctor's orders after starting pred, double what I'd taken for years, and there was a small amount available in my calcium supplement and of course in milk which is fortified with D where I live. As I have a diagnosis of sarcoidosis (non-symptomatic) I had my D level tested after a few months and it was found to be very high. Not quite toxic but too close for comfort. I didn't take D all winter, just what was included in my calcium supplement, which was relatively low. Level went to low normal. After that I resumed taking 1000 mg per day and a third test showed an optimum level.
Unfortunately x-rays aren't helpful except in cases of extremely advanced osteoporosis. You would have received a far lower dose of radiation from a DXA scan. Honestly, one wonders about the medical profession - and the administrators who control the purse strings!
You really need a Dexascan which measures bone density. I assume you had the xrays looking for things such as osteoarthritis? Dexascans do seem a bit like gold dust. In my area we had to fundraise for a scanner and now people from miles around come to use it. I still don’t understand why they stopped your Adcal!
A friend of mine who helped with the fundraising for our Dexascan and arranged for Camilla Duchess of Cornwall to open the facility, was turned down for a scan too. She went ape and got one in the end!
I was still 51 when mine started but it wasn't given a name until I was just 57!
Your doctor is wrong - a dexascan for bone density should be done within the first 3 months to get as near a baseline reading as possible (says so in BSR Guidelines) and mine was done in less than 2 months. It was fine so I took no more AA and in 7 years of pred my bone density had barely changed last time it was done and is still firmly in the OK range on just calcium and vit D.
Yes, the average age of diagnosis is claimed to be 72 but since most people over mid-70s will develop it at some point it does require a load of younger patients to lower the average. But given how many people in the 50s are told they can't have it as they are too young it doesn't get listed as a diagnosis and they tend to be fobbed off with fibro, depression or amongst a load of other options, "don't know"! If we were identified sooner - the average age would be much lower...
Before I was ever put on pred, after an aquafit class I could manage adapted Pilates and Iyengha yoga (postures) and both helped mobility a lot.
Ah, thank you so much for telling me this, I am not going to start the A Acid tablets then until I have had a bone scan, even if the dr doesnt agree, another two or three months surely won't make much of a difference. If I end up not needing them it will be great, and i will only have wasted the cost of a prescription, rather that than risk my health. Do I need to go through my GP to get a bone scan or how would I get one?
I think GPs can refer or dexascans - depends on the area I think. There are also places that do them privately - and the price varies widely! Southamptom charge about £70 still - other places are over £150!
Hi and welcome to the club that none of us wanted to join. You do need a dx scan right at the start not everyone’s bones are affected by pred and A.A. is not without its own side effects. I’m two and a half years with PMR/GCA and Kate’s book has been a great help as has this forum, lots of tips, advice , encouragement and support and sometimes a laugh along the way. Maybe you need to ask at work for a referral to occupational health. All good wishes.
Hello there Lonsdalelass! Welcome - I found this forum in May when I was 9 months along the PMR road. It has given me so much confidence to take control of my pred journey that now my GP and I have decided it is OK for me to manage and him to agree with my suggestions as to reduction or increase should that be necessary. Good Luck to you!
Hello Lonsdalelass.welcome to this very informative and supportive site.l am sorry that you have been through a lot of stress lately,that does not help PMR.lt must be hard for you having to work while coping with PMR,but the steroids usually work wonders quite quickly,just try and not overdo things if possible .Best wishes and take care,and keep posting.
Thank you so much for your kind words. It helps a lot. Yes I'm enjoying the site, I only posted for the first time today and can't believe the number of responses I have had, it is really reassuring and supporting me in such uncertain stages. I will let you know how I get on. I hope you are managing your symptoms.
Also, i was able to knock out the acid reflux by making sure I avoid dairy (take calcium and D3), and that any meds I take I take with food and never on an empty stomach. I'm still working as well, and it's a struggle, but as long as my meds are balanced I can get through it okay. Thank God the job is a sedentary one...
72 may be the average but there are people in their 80s and 90s and also 50s and 60s to get that average age. As the others say it would be a good idea to get a Dexascan before taking Alendronic Acid to see if you really need it. I have had a GP who is mad keen I should take it and we argued every time I saw him.
Yes, I always like to follow drs orders but in this case I would be much happier having the scan first, taking lots of meds is stressful especially if its one I don't need. I will just have to push for it I think, even if it means upsetting him!
It is actually recommended you should have a scan in the first few weeks after diagnosis. I think they read a list of how to treat PMR with a list of meds and go through a tick off list. I am not sure most doctors come across PMR and particularly GCA that often although a lot give you the impression they see a patient with it every other minute!
Welcome to the forum Lonsdalelass. As mentioned in other responses, you will find the folks on here to be very supportive and informative. They have a lived experience of PMR/GCA which makes it easy to connect with them as they will "get you" in ways others won't/don't. Feel free to ask us questions along your journey.
I was diagnosed just before my 56th birthday by my gp. He is now supervising me while I continue to lower my pred dose as my assigned rheumy was terrible on so many levels. My PMR symptoms emerged 5 months before I was diagnosed after a time of (good) stress (marriage, selling/buying a house, moving to a new community and retirement). I have learned that stress makes my PMR symptoms worse, as does overdoing it with exercise.
I had neglected my physical health for some time prior to PMR and I had gained weight, I had also developed high bp, osteoarthritis in both knees along with other chronic knee injuries that require injections and likely eventually surgery. I have since made a number of lifestyle changes (diet, deep water exercise/walks, lots of rest) that have resulted in weight loss (which is vital given my knee issues), and helped me avoid most steroid side effects. I started at 20mg pred May 1 and am down to 10mg (lowering again next week). I've reduced my bp medication, at first by half, and am now trying to eliminate it completely (with my gp's supervision).
My gp sent me for a bone density scan within 2.5 months of diagnosis to get a baseline (gratefully my results were good, no additional meds).
Being diagnosed was a big relief for me, but shocking nonetheless. I went through stages from denial through to acceptance. I was angry for a period of time given that I had literally just retired at age 55 about a month before symptoms emerged, not what I had envisioned at all. It has impacted my relationships with those closest to me, however I will say things are better at this stage about 6 months post diagnosis.
I hope things go as smoothly as possible for you as you navigate these new waters. Advocate for your health, get plenty of rest, and allow yourself to feel what you feel at each stage in your journey. Utilize your supports along the way, you are not alone.
Hello PMRCanada, thank you so much for your message. I can relate to this on so many levels, and I am so glad things are getting better for you albeit early days. I have had a bad couple of days, but am just getting used to the meds and getting my head around it all probably, I am only two weeks in with taking my steroids, unlike almost everyone else on this forum who are probably years in. You're right, it is accepting it and not trying to fight it by being angry, my stress levels wouldn't need it. I think I over exercised too before my diagnosis, thinking about it, as i got hooked on a dvd in a bid to tone up. I can see this is going to be a learning journey for me. Thank you again.
Hi I only got told I had pmr three weeks ago and I am 55. Average age isn’t 72 if you look at the age of people on here and I have researched and it’s definitely more common in the 50’s than our doctors are willing to admit. The forum is brilliant and you will get loads of support from everyone. I have decided not to use aledronic acid because of the side effects and after advice from the others in here. You should also have had a test to check you also need it, which I was advised about from here,which I haven’t had and judging from your post you haven’t either. It’s ultimately up to you what you decide to take but I for one don’t need the pressure of more issues.
Hello there, no neither do I! I have decided to ask for a scan before taking the A Acid tablet. Good to know you are like me in just getting diagnosed and only 55. Let me know how you get on
Morning Lass, welcome to the "Club" quite literally. You have explained all the experiences of PMR and how the rest of us here to though. Me ? my first experience was getting up one morning feeling like a serious road accident victim. By all means keep in contact on here. It`s a long road to recovery.
I was 53 when I was diagnosed with it. I am now 55. Struggling to reduce down from 6mgs. I started at 15mgs. However I also have other issues like RD,OA and hypothyroidism.
Personally I wouldn’t touch alendronic acid unless it was proved I needed it ie via a dexa scan. I think it is good to have the scan as early as possible so it gives a baseline to work from and why take a medication with another load of side effects if you don’t need it. My rheumy relooked at my scan results recently and said they were very good and then in the next breath prescribed them for me. I won’t be taking it until I have another scan and it proves I need it. I already take enough meds as it is.
Anyway take all the advice you can get from this site especially about tapering as it is excellent.
Welcome Lonsdalelass. I'm just in the door a wet week before you, so can't show you the ropes. I'm 61 male and was probably fitter than at any time in thirty years. Planned to take on four hour mountain climb to the summit last July, and by September a neighbour helpfully delivered a summer frame.
I have given it back 😁.
Nice bunch in this room as you see, lots well down the road but prepared to look back and shout encouragement to us recent recruits. This is my new job, always thought I would like a job where I was told to do less and take it easy. Should have been more careful with my wishes!
Hello Lonsdalelass, are you near me Cumbria? After seeing several doctors and three Rhuemys, all nice people but with different opinions on how to treat/cope with PMR and steroids I must say I find this site more helpful as folks here know what they are talking about. Fortunately my doctor is leaving the tapering to me so I am following the slowly does it, take it easy advice repeated so often on this forum, other sound advice is, listen to your body!
Between Carnforth and Kirby Lonsdale. I attend the Westmoreland cottage hospital which is brilliant. Hope you have good Rhuemys where you are. I sometimes wonder if the NHS service is better as there are less people here.
Hello Lonsdalelass and pleased you've found this forum. I joined nearly three months ago after getting a PMR diagnosis. This site has provided a wealth of knowledge and advice, always backed by practical experience and often with reference to sound research papers etc. There's always someone ready to help and I've found it to be a lifeline.
I'm sorry that you're on this journey. I'm finding it incredibly challenging. It's certainly life changing and limiting and there's no typical pattern; you meet new hurdles along the way. I'm trying to accept that for some time, my life will be different and there's nothing much I can do about it. Although relatively pain free now, at the 12.5mg from starter of 15mg, fatigue is the real problem. But everyone is different and you may be ok. The main point is, please bear in mind it's a tricky journey and be prepared to adjust your expectations.
I'm no medic, and can't advise on medication, but like you I was prescribed AdCal and AA with the steroids. I did a little research and was immediately concerned about the AA. My GP had phoned me to say she was preparing the prescription, but I needed a full dental check, including X-rays BEFORE starting the AA. Any necessary dental work should be undertaken first. There's a good reason for this; one of the known side effects of the med can affect the jaw. There are other known adverse effects, including bone fracture. It's your body and your choice, but I would urge you to consider further. It's not easy challenging the dr and it possibly won't make you popular, but I never assume that dr knows best.
I wish you well and never be afraid to ask or even moan here.
Hi. I’m 54 and was diagnosed with PMR in August.
Started on 15mg Pred but have now tapered down to 11. My GP wants me to try to be off the Pred in 6 months.
Mood and fatigue was a bit of an issue. Mood seems to have settled down. Fatigue comes and goes. I work full time and have found it a bit of a struggle but have a good boss who lets me work from home once a week.
Overall, results have been really good. I struggled to put my socks on before I started treatment and now stiffness has all but gone.
Be careful Brandy man. The taper plan is extremely ambitious and could set you back to your starting point again if rushed. Listen to your body! Best wishes.
Thanks for the advice. So far so good. Have to trust my GP though. She has been brilliant.
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I wish you well brandyman. I was diagnosed a few weeks before you and thought the 'plan' to treat with a rapid steroid reduction plan, like you starting at 15mg and would be off treatment within 6 or 7 months, was brilliant. All good til 10mg when symptoms returned and proved difficult to manage. After another rheumy referral, had to go back to 15mg and change to a very much slower taper plan...2 years minimum, probably longer. Its great to have medical trust and support...but if you have any problems, I'd urge you to bear in mind that there's a wealth of practical experience which Lao supports a longer and slower taper. Fingers crossed you're one the lucky few who sail through the condition and treatment.
Brandyman you can try all you like to get off pred, you have a chronic illness that dictates to you how long you will need steroids. The average time is 5.9 years. Also there is no option but steroids, so by stopping steroids too early you could have problems. Just go slowly and take your time.
"My GP wants me to try to be off the Pred in 6 months."
He does does he? If you have PMR it isn't going to happen - PMR is a chronic disorder that has a median duration of 5.9 YEARS not months, and all that will happen if you reduce too far is you will be back where you started.
Hi, I was 56 when first diagnosed, 3 years on and apart from a few dips and flares (mainly due to seeing a gp in the practise who is very uninformed on
PMR!), I am now down to 3mg. The "switched on " gps let me taper and rise as and when I feel it necessary. Most of the knowledge I have gained has come from this forum and the pmr support group sites. I have taken omeprazole for many years and this fact coupled with my mum's osteoporosis and the steroids, I have regular bone scans. Luckily all is good so far! I do Pilates and yoga, some classes I find more difficult but you just take it at your own pace, I am convinced they help greatly. I have current issues with cramp in the major joints, magnesium did not help but my gp is looking into it with further blood tests. I am also having the flu jab as I have noticed when I have colds etc, I usually get a flare. Just got over a cold and took 3 days of 5mg and now back to normal 3mg. The fatigue has been one of the worst things. It's a long journey and no one can race through it, be kind to yourself, do not let anyone push you to reduce the steroids too quick that is definitely the worst thing for PMR and you! I really urge you to find a good Pilates yoga class with an instructor who listens. All the best. Fiona
Hi Fiona, yes i am going to be looking out for a good class when i am feeling a bit stronger, and i agree it is the fatigue that is now hitting me hard.
So sorry you have been forced to join our club. I've been on the road 3 1/2 years, not in my 50s or working but it changed my life entirely. It takes a while to get your head round the long term condition, and anyone with a modicum of curiosity is desperate for information at the start.......cause, cure, how long, will I get GCA etc etc. In a nutshell, I would say accept the level of Prednisolone you need to make life tolerable, take Adcal to protect your bones from osteo disease; absolutely refuse Alendronic Acid or similar until a Dexascan proves you need it. Any other "take this" from doctors, question question questions?? Why? How long for? Will it affect other meds? Use the pharmacy service in UK, where the pharmacist goes thru all your meds, when and how to take, side effects contraindications particularly with over the counter medicines. Pharmacists are experts in medicines, doctors in diagnosing!
Acceptance is key to an easier life, don't fight it to get back to where you were before. Mindfullness and meditation can help, it did help me.
I found this forum really helpful. You are lucky to find it early. Also local support groups seeing other members face to face is lovely.
Hi there and welcome I was 51 when I was diagnosed. This was 2 years ago in February. As I have learnt from this forum we all think we are different and are going to beat this in months rather than years. I have learnt to accept the condition. I have worked full time in a director level for the whole time and I am now down to 2.5 mg of Pred. Worse for me has been my teeth problems 5 root canals and 1 extraction I think Pred or condition related! But hip hooray I had my implant phase one procedure this week. If I mange to be Pred free by February I will believe I have done well and the condition is in remission at least. Good luck and be kind to yourself. This isn’t a race to the end and that takes some time to accept. With the support of this site I got there 😀
Do you know, i am starting to think i have maybe been starting with PMR as soon as I hit my 50s, as like you I have had several problems with my teeth in this time, including an awful traumatic extraction leaving me with dry socket, a root canal, a crown and several fillings. It's all starting to make more sense as I read everyone's messages. Also at around the same time I was having the occasional moment during sleep or on waking, when I had real difficulty in turning my head, such stiffness and pain, like a paralysis. I remember feeling a bit anxious at the time but as it didn't happen every week I just put it down to maybe sleeping in a bad position, or in a draught!!!!!! Now I am thinking it was the PMR starting..........which oddly is a bit of a relief knowing it could have been this and at least nothing more sinister.
There are a lot of doctors who say it starts suddenly, often overnight, but I think most people actually only realise they have it when a tipping point is reached which is seen as "sudden". I can list each of the things that appeared one after another. Finally something else happened and the PMR suddenly was far worse and couldn't be ignored any longer.
So glad you found this forum so quickly. It makes a world of difference. Even my doctor is listening to it now!! I am so sorry you have PMR so YOUNG! with no time to rest. But you will prevail. Do NOT take the AA drug until you have a dexa scan and even then I would not. You can only take them so long.. a few years.. and aside from all the side effects what then will you take at 90 if youve taken them already!! AND exercise and good diet is key!. Live your life as best you can but be kind to yourself when you are exhausted or upset. Prednisone is a wonder drug but it does have its down sides too. Don't worry too much if your hair falls out a bit.. just come back to this forum. My hair sylist said mine was so thick before that nearly 1/2 gone looks much better..! haha. All the best to you! Everyone on this forum is wonderful.
Can i just say a big thank you to everyone for taking the trouble and time to reply, all your messages mean a lot. I would be really courteous and reply separately to you all, but it is going to take me a while so please accept this for now at least. I am new to social networking!!
You can simply "like" the posts as you read them! And it's worth doing a little reading about the various supplements which get suggested. Turmeric, for example, isn't for everyone although others swear by it and have no problems.
Hi there. I'm also relatively new to this journey. The only thing I will add is the importance of changing ones diet to avoid weight gain if that is something that concerns you. I have eliminated sugar and any added salt and refined carbs. from my diet which was pretty healthy prior to diagnosis anyway. I was also midrange BMI and very active. My activity level has of necessity had to massively decline. Basically, I've added extra dairy....a wonderful tumeric, ginger, black pepper latte, protein sources, lots of salads and vegetables and feel really good dietwise. At least, that's something I have control over!. I am thankful that two months into this I have lost some weight that I could afford to relinguish . To pack on kilos would have felt just too much. Lots of people don't realise that the weight gain on prednisone is not inevitable with dietary changes. Good luck
Hi there, yes I agree about eating well to avoid weight gain. Like you I have always been fairly active and kept my weight under control, so being on steroids does make me a little anxious. I know my face will no doubt fill out, but hey, on the plus side it will iron out my wrinkles and everyone will think I have had botox!!!!! HA HA.
I am also trying to cut down on sugar and simple carbs, but do believe that we all need (and deserve) a little treat now and again. So if you fancy a biscuit, have one, just not half a packet! I have a query about the turmeric,like you I was having a hot milk turmeric and black pepper drink a few times a day, but haven't since I read somewhere about the curcumin content of it on the steroids? Worth checking, I might be mistaken or confused as I have been reading quite a bit of info lately.
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