Unwelcome Set Back

[BigEric]

hello there one and all.

since my last post I’ve had an unwelcome flare up in my joints causing pain and hideous stiffening. I felt so disheartening going back to square one.

the doctor has increased my Prednisone from 15mg to 30mg daily.

this set back has created my usually strong mental health to plummet. I’m very much a ‘can do & will do’ girl but this has knocked me flat. My husband, who has been amazing, looks tired and stressed. I don’t know who is more worried about the other. Sadly we’ve had to cancel our trip to South America, we both know we have no option but it’s the second time of cancelling.

if this pain/ stiffness improves I will be alright, I know. Fingers crossed(if I could) this increase in dosage helps.

I would like to ask if anyone takes supplements. It’s been suggested by a nutritionist I take calcium & magnesium. I have also read that vitamin D could. Any thoughts please?

Thank you for your patience and I look forward to your response.

Take care everyone

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your setback -but have to ask have you let your “can do” attitude override common sense in relation to PMR…

would refer to to my intro/info post (and maybe let your husband read it) and make a real point of trying to put into practice the info in the pacing link therein-

healthunlocked.com/pmrgcauk...

You should have been prescribed at VitD/Calcium supplement alongside Pred

[BigEric in reply to DorsetLady]

thanks so much. I did read the article first time but a lot more has sunk in this time. With regard to my attitude I can see what you mean however when I unwell am a paragon of virtue. Historically I inherited my mum’s and grandfathers genes and have had osteoarthritis for many years. First major op 25 years ago 3 prosthetic discs in my lower spine, followed by 3 knee ops last one being a cartilage transplant, neck vertebrae fused, right hip replaced and left hip clear out. Ex PE teacher, aerobic instructor 18 years - broken in my 60’s! I’ve learnt to keep myself strong, fit and slim, I have a metabolic age of 54 & that sums up the said attitude but I do listen to my body, know the value of rest and recovery. Apologies for banging on but I’m passionate about people taking responsibility for their own health but as the article says, PMA isn’t like normal illness and certainly not one I’ve dealt with before. I found it really useful to think of it as a long term illness - I know that will help my mindset and recovery. As always lovely DorsetLady your response has been encouraging but also down to earth. I can’t thank you enough for sharing your experience 💞

[DorsetLady PMRGCAuk volunteer in reply to BigEric]

I did read the article first time but a lot more has sunk in this time.

I do know it doesn’t always sink in, which is why I say keep it, and refer to it later when you know a bit more about your illness…then you can relate to it.

[PMRpro Ambassador in reply to BigEric]

"I did read the article first time but a lot more has sunk in this time."

We know - that's why we get a bit boring and bang on and on and on about some things

[PMRpro Ambassador]

Everything DL has said!!!!

But are you sure this is definitely and specifically JOINTS? It isn't really joints in PMR but the soft tissues AROUND the joints and it is a bit different.

[BigEric in reply to PMRpro]

hi PMRpro that’s really interesting. I refer to joints as I don’t know how to differentiate between soft tissues or the joint itself. The only thing I have to compare is that my left hip needs replacing. I’ve been nursing it or rather taking damage limitation action to look after the joint for some year which has worked really well. But now the PMR seems to have reduced the joint back to its needy state, now that pain is very different from the rest of my joints, a huge amount of grinding and crunching is involved. Does that mean anything. Thank you for your response it was really useful.

[PMRpro Ambassador in reply to BigEric]

It's really in the context of is it PMR or is it arthritis - in inflammatory arthritis the joint tends to be swollen, hot and painful, That isn't really seen in PMR.

Grinding and crunching sounds a bit daunting! I've not got OA, not in my knees or hips at least, so I have no idea what it does. Could it be bone on bone OA? I'm assuming you mean the hip pain? I had awful hip pain in PMR pre-pred and was quite sure I needed a hip replacement - it was bursitis, part of PMR and, happily, went away with pred,

[BigEric in reply to PMRpro]

definitely not inflammatory arthritis I have none of the symptoms. With regard to my left hip I had the right one replaced about 11 years ago and was told I would need the left replaced but to my trainers credit he’s help me minimise any further damage and lasted it’s lasted this length of time. Could well be bone on bone grinding at the moment I don’t want to muddy the waters by introducing another problem it’s my experience it sends the Docs into a tailspin!

[PMRpro Ambassador in reply to BigEric]

It does - but if it IS the hip demanding a replacement it isn't impossible on pred if you find the right surgeon and I know a few whose need for pred fell off rapidly once the hip was done, as if the hip pain was feeding the PMR.

[BigEric in reply to PMRpro]

Wow! That’s great👍 Thank you 😍

[Purpleazalia]

I'm not surprised you're feeling low and worried in the circumstances you describe. I hope the 30mg makes a difference quickly.

Doctors in the UK usually prescribe a calcium/vit D supplement to help protect bones when on steroids. They made me feel nauseous so I purchase my own vit D tablets instead.

There are people on this site who also take magnesium and K2 - you could try putting 'magnesium' or 'supplements' into the search bar to find posts where these have been discussed previously.

[BigEric in reply to Purpleazalia]

thanks Purpleazalia ( love that name) I have today contacted a Dr I have used before as he’s a natural health expert, chiropractor and nutritionalist. He has suggested it may be vaccine induced or just PMR and wants to see my blood test to ascertain which one, he also wants a blood test taken about 3 years ago. That’s my next challenge getting them from the surgery! Once he has all the facts he will then create treatment/ support from me. I’ve used him several times and have great faith in his ability and different approach from the NHS. I’ll keep you posted.

[Purpleazalia]

Here's a link to a post to start you off, you should then be able to locate 'related posts' near bottom of page (on a mobile) or right hand side of the screen on a laptop.

healthunlocked.com/pmrgcauk...

[Ruins67]

In response to your question about other vitamins. I am in the UK and vitamin D was automatically prescribed as soon as I was diagnosed with atypical PMR. Even when the muscle pain really got better, my main problem was tiredness. I had stomach flu over Christmas with a flareup of PMR. I took extra time from work to recover and decided to try B12 supplements. I’ve been taking B12 now for over two weeks and I have noticed a really big difference. I still work part time in the morning so I find when I get home I like to put my feet up immediately and while I don’t always sleep I do rest. Yesterday I didn’t rest and carried on doing a number of jobs that needed to be done around the house. I didn’t feel absolutely exhausted which is what I used to do. I’m not saying B12 will work for you but it’s worth a try. I’ve started with double the recommended dose. It’s water soluble so you can’t OD on it. Excesses is excreted through the urine. Good luck. 😊

[BigEric in reply to Ruins67]

thank you so much💞

[whitefishbay]

I don't know how much this will help but maybe cut out gluten...seems to help my OA and stiffness in my fingers and pains in my feet. I know it's a longshot but worth trying everything. Sorry you had to cancel your trip. I love to travel. Best of luck.

[BigEric in reply to whitefishbay]

I’m really keen and open to all suggestion whitefishbay so thank you. I’m sure you’re aware of the resistance starch theory. I always have rye, sourdough or home-made bread which has been frozen and then toasted even then I don’t have very much of it. Pasta again is always whole-grain cooked reheated and then eaten this makes it a resistant starch. I rarely eat white rice but have wild rice or Basmati or substitute with quinoa. if anyone is interested in this both Dr Michael Mosley and Dr Chris Van Tulleken have done TV programmes about this it’s very interesting but can cut down the rise in blood glucose by 50%. Once again thanks for your suggestion 💞

[Viveka]

Just offering my sympathy at your set back. I thought I was doing well with GCA and then PMR emerged and it has been hard to deal with. So sorry you have had to cancel plans but things will get better. Perhaps you have some mental health strategies you can use to take the edge off things now and help you recover positivity more quickly. If not, that may be a good thing to investigate.

[BigEric in reply to Viveka]

thanks Viveka I love the help and support give each other 💞

[Tiggy70]

Sorry to hear about your set back and cancelled trip. It’s so disheartening when things start to go in the wrong direction. A lot of us have been there and I’m sure things will improve for you. Hang in there! 🌺

[BigEric in reply to Tiggy70]

thank you Tiggy, it means so much to me 💞