Conflicting information

[Kendrew]

Would appreciate any thoughts/advice please.

Approx 10wks ago I developed some aches & pains in arms and legs followed by a really bad cold that lasted a week and laid me up in bed for a day. I felt really unwell but repeated covid tests were all negative and the cold symptoms eventually cleared up.

However, the constant and various manifestations of leg aches & pains didn't and I'm still unfortunately experiencing them!

I contacted my rheumatology 'fast track' team ( not so fast it would seem!) and over the past number of weeks have had every relevant blood test possible, several phone conversations with our specialist nurse (who worked alongside Prof Dasgupta) and his 'replacement' rheumatologist, and no one has yet been able to reach any kind of diagnosis.

All the blood tests have been within normal parameters, including a basal cortisol test, and yet the discomfort remains, manifesting in the following ways:-

- General aching of what feels like the muscles in legs, particularly front, upper thigh, and calf muscles.... although I can feel it all over my legs at times.

- twinges of pain that come and go up and down legs

- a sore bruised feeling that comes and goes around ankle joints & knee joints

- pain when pressure applied to outer bony bits of knee joints or hip joints

- difficulty walking up stairs ( when stepping up I've felt pain in front thigh muscles and hips are stiff))

- stiffness in knees & hips.

(My arms have had intermittent and minimal twinges but nothing like my legs.)

- a tightness & pulling sensation all down outside of lower leg if I kick my feet up onto the sofa to side of me.

I've no neck, shoulder, jaw or head pain.

I never experience all of these things together and some days I've even felt much improved.

The symptoms are sometimes worse in the morning, improving by evening, but I can also feel reasonably ok in the morning but worse by the evening. Paracetamol has helped ease the aches and pains on most of the 'bad' days, but obviously not the lack of energy.

Alongside this I've felt an overwhelming fatigue... more so than usual and felt completely drained of energy some days. Its like all my strength has been sapped out of me.

- walking up any kind of incline, however gentle, will quickly sap my energy too.

Throughout all this I was repeatedly told to remain on my current dose of 3½mgs, but having just been to Cornwall for 2wks and spending much of the first week feeling awful, I decided to increase my dose by 5mgs. (I first sought some advice from DL as I wanted more info on adrenal insufficiency and she's our resident expert on that)

It definitely helped, increasing energy levels and reducing discomfort. I eventually reduced back down to my 3½mgs and all symptoms returned again.

Today I finally got to see my rheumatologist. She took more blood and I had a chest x-ray (to detect an enlarged aorta) and x-ray of my hips.

She said I still wasn't to increase steroids until all results were back and if everything did indeed point to a flare then increasing steroids would resolve the symptoms in short term but as soon as I reduced again they'd still be there, and therefore she wouldn't recommend me doing that!

I obviously counter-argued that I'd stay on the new 'effective' dose for a while before beginning any new reduction but she didn't agree with me. If I am experiencing a flare she wants to put me on Methotrexate which I'm not happy with at all.

I should receive these most recent test results next week and hopefully get some answers.

In the meantime, I'd be grateful for any thoughts, ideas, advice as to what might be going on and thank you in advance for both responding and reading this post.

[PMRpro Ambassador]

Sorry - given the dose you are at, she is crackers to want to add MTX now. You have flared but you also are suffering the effects of the infection and you didn't do sick day rules at the time, your body is struggling to recover.

She obviously doesn't really understand the disease - pred cures nothing, it is a management strategy and the underlying disease is still there, until it burns out and it isn't. ANd yur hasn't burned out yet.

Just because the basal cortisol is within normal parameters doesn't mean that that is what you need to recover from that illness, whatever it was. Your basal cortisol may be OK - doesn't mean the response to increased demand is there. You have two things creating the problem and MTX won't address either of them.

You need more than 3.5mg - but do you really need 8.5mg?

[Kendrew in reply to PMRpro]

Hi Pro Weirdly, her argument for not increasing steroid dose was the same as yours and mine for increasing it! She said pred doesn't cure PMR and therefore increasing it won't cure PMR. She's definitely not got the point.

I know increasing it won't cure it, but of course it will bring the inflammation back under control and therefore reduce the symptoms!

I don't think I need 8½mgs.

I'd been good at 3½mgs for 9wks until I got the cold. I stupidly didn't put the 'sick day rules' in place. Just didn't cross my mind!! I should have known by now what I needed to do!

[PMRpro Ambassador in reply to Kendrew]

So WHY does she think they use pred? It is blatantly obvious that if it doesn't cure, you need enough to manage symptoms.

My daughter did 3 or 4 tests before she got a positive - and that was with a different pack of NHS-issued tests. They are really unreliable.

If 5mg is enough to feel decent now - refuse MTX , She can't force you, How do you get on with your GP?

[Kendrew in reply to PMRpro]

I have a really good gp but he tends to leave my PMR care to the rheumatologist. He was really helpful when I developed that awful urticaria rash, increasing my steroids up to 30mgs for 10dys when the prescription antihistamines weren't making much impact and then reducing back down. His treatment worked perfectly, so I may have better luck speaking to him if necessary. I feel determined that if its a flare, Methotrexate is not the pathway I want to take.

I actually feel myself that I may have had covid rather than a simple cold.

Thankyou for your comments and advice again.

[PMRpro Ambassador in reply to Kendrew]

You need him onside. She isn't listening

[Kendrew in reply to PMRpro]

It definitely seems that way. It's disappointing though because she's seemed really clued up until today's conversations.

[Ardmore1 in reply to Kendrew]

Hi Kendrew, I’m sorry your rheumatologist doesn’t seem to understand.

Can you tell me a bit about ‘that awful urticaria rash’ please. I have just had it and my GP increased my Prednisolone up to 40mg for 7 days but it didn’t seem to work 100%. Which antihistamines were you taking and what dose?

I haven’t seen anyone else talking about urticaria.

Thank you

[Kendrew in reply to Ardmore1]

Of course. No problem.

I discovered some red itchy patches on my arms one evening whilst taking a bath and by the morning it had developed into a very itchy rash all over my arms, legs, chest, stomach, back and all those little 'creases' and areas that can get warm & sweaty.

I'd not done anything differently or eaten anything different and it still remains a mystery as to the cause of the urticaria.

Initially my GP prescribed 30mgs Fexofenadine Hydrochloride to take daily in a morning, but 24hrs later the rash was still spreading and now was manifesting with raised, red hives that itched constantly.

My GP then added another antihistamine to take alongside the Fexofenadine - two 25mg tablets of Hydroxyzine Hydrochloride at bedtime.

After a few days there was still no improvement so he also increased my prednisolone up to 30mgs (from 6½mgs) for 14dys and then I reduced it back down to 6½mgs.

This worked but it did take my skin approximately 6 to 8wks to fully recover and during that time I only bathed/showered/washed with Dermal500.

I was also VERY careful what I put on my skin and only used simple, natural products without any perfume.

I moisturised several times a day with a gentle but nourishing moisturiser.

I hope this helps and you get sorted.

[Ardmore1 in reply to Kendrew]

Thank you very much. Mine came in exactly the same way as yours and I’m still none the wiser as to what the mystery allergy is!

I’m hoping, as I’m sure you are, that it has disappeared for good! Like you , I’m being super careful with my skin. Mine has taken about 8 weeks to go but I still feel that my skin is sensitive.

[Kendrew in reply to Ardmore1]

Mine occurred approximately 18mths ago and since it cleared up.....so far, so good, but I do still take special care of my skin and I'm very aware of what I use on it. Like you...even 18mths on.... I know that it's still quite fragile, but then steroids unfortunately cause the skin to become much more sensitive to things too.... like the sun's rays. Wounds take longer to heal and bruises are evident for longer than they may have been pre-prednisolone.

I'm pleased to hear your skin has recovered. Fingers crossed the urticaria doesn't return.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you are still struggling -and agree with both you and PMRpro re MTX.

Not sure why she hasn’t grasped that if 3.5mg isn’t enough yet 5mg seems to be, she doesn’t let you return to that dose whilst she awaits the blood results.

As PMRpro also says there may be some hangover from the virus - and despite negative tests -I wouldn’t completely rule out it could have been covid.

I had it in April -first time and mild case- and then my age related booster in May. Felt really out of sorts a few weeks ago, and sure it was related to virus -couldn’t identify any other reason.

Hope you soon feel better -and get some sensible answers 🌸

[Kendrew in reply to DorsetLady]

Thankyou.

[TheMoaningViolet]

Hi Kendrew, sorry to hear this. I was wondering whether your doctor was looking for something other than PMR and this may be the reason why she is advising against increasing steroids for now. If it's just PMR, as the others have already said, I would be similarly resistant to adding another drug into the mix given how low your Pred dose is at the moment. I hope you get clarity soon and can do something to to improve your symptoms. Vx

[Kendrew in reply to TheMoaningViolet]

Thankyou.

[piglette]

The lack of energy sounds like the ‘deathly fatigue’ caused by the adrenals complaining that they have to work again.

[Kendrew in reply to piglette]

That's what I thought but rheumatologist said that cortisol test result indicated adrenals wouldn't be the cause.

My understanding is that just because they've been shown to be capable of working again, doesn't mean that as they're coming back to life, they won't find it hard work, and therefore there'll be a physical impact on myself.

Thanks piglette.

[piglette in reply to Kendrew]

You are right, all the test shows is that the adrenals are capable, it does not tell you if they are complaining about having to work. A bit like today’s teenager!

[Kendrew in reply to piglette]

Haha! 😄 Thankyou for making me laugh.

[HeronNS]

So sorry you are dealing with this. Hope you feel better soon.

As for adrenals, my morning cortisol test of a couple of years ago showed results perfectly in normal range and I've been tapering ever so slowly since then, now poking at 1 mg. My inflammation markers are better than they've ever been. And yet with stress I get PMR-like pain in neck and shoulders, and as described another day, an attack of wobbles if I'm really stressed (dental work). So adrenals not anywhere near up to the task of dealing with more than normal daily life.

I bet you would feel so much better with a couple or three more mg of pred for a few days. Good Luck!

[Kendrew in reply to HeronNS]

Your experience with the adrenals is reassuring to hear and thankyou for your kind words.

[yogabonnie]

Hi ! Easy to not think about sick day rules when it doesnt seem way out of the ordinary. I vote for 5mg. and then DSNS. but I dont KNOW ..as you know.. but think definitely you having a flare and will get it under control soon. I just went through one and from .333333 mg a day back to 5 then quickly down to 1.5 and sitting here for a while. It is such a royal pain. Hope you feel a lot better soon. I think worry and stress of not know what the heck is going on plus having to argue with doc does not help. Hope all your tests turn out fine and you fine that sweet spot where you are on enough but not too much or too little prednisone...Lagom. as they say in Sweden!! Sending big energy to you. Bonnie

[Kendrew in reply to yogabonnie]

Thankyou Bonnie, I know I'm receiving good advice from you all and everyone is saying more or less the same thing. I'm fairly confident I know what I need to do now.

Hope you're well and all good with your family.

Incidentally, I'm still doing my yoga for osteoporosis. Xx

[Koalajane]

I hope you start to recover soon. I would have thought that methotrexate now was the wrong thing at your low dose. And doesn’t it take quite a qhile to start working. I think a few more mg of prednisolone is the answer and hopefully your body will start to recover.

Good luck with this

[Kendrew in reply to Koalajane]

Thankyou.Everyone's opinions all seem to consolidate what I was already thinking. Its easy to doubt yourself though so having some shared opinions based on sound knowledge and personal experiences makes decision making much easier.

[Charlie1boy]

Hi,

I had to scroll back to check who’d written the post, and was surprised to see it was from you, because you seemed to be coping so well. Then your rheumatologist got in the mix!

I’m not going to comment on the replies. It appears you’ve got all the support you need there. Perhaps now’s the time to show your true Yorkshire grit, and stand your ground. If anyone can do that, then for sure it’s you!

Looking forward to hearing better news from you in due course.

Good luck

Paddy

[Kendrew in reply to Charlie1boy]

Thankyou ❤

[Flivoless]

Interesting you say "any kind of incline, saps your energy". I had been on 4.5mg for quite a few weeks with few problems (well not PMR related anyway) and could easily do my daily walk which includes to inclines, one short but quite steep and the other a longish more gentle climb. However, the last couple of weeks both cause me to puff quite heavily. Bending over also causes me to puff somewhat. The rest of the time I'm ok so I'm putting it down to my adrenals not yet coming to the party.

[Hollyseden in reply to Flivoless]

That's interesting. I also get puffed on any incline but hadn't linked it to adrenals, was thinking more chest problem or I need to lose weight etc.🤔

[PMRpro Ambassador in reply to Hollyseden]

And PMR - it is a very common experience, Your muscles have to work harder going up hills

[CaraDee in reply to PMRpro]

Thank you for yet more bits and bobs of useful info, PMRpro.

I am able to walk on the flat a pretty long way, but inclines drain me; I've been wondering why.

Of course, it makes sense now, that your muscles have to work harder going up hills.

Best wishes

[Bridge31]

I’m on day 3 of a streaming cold and I feel awful. It hadn’t occurred to me to apply sick day rules. Is it still worth it do you think ?

[Kendrew in reply to Bridge31]

I'm pretty sure most people would say its still worth it if its going to help support your body through the virus.

[Bridge31]

ok thanks . Swallowing it now😇