Good vibes please...

[softekcom]

Went to the GP yesterday...

- repeated cold sores. I have never had them before. But over the past three months, non-stop.

- repeated chilblains.

- 'chicken skin' on the inside of my knees

- strange pain in my left heel/sole when i walk

- Skin on my fingertips thickening and splitting, making housework very difficult. I thought it was dryness. But the usual moisturisers aren't working.

- Some weird scalp condition abt 4cm sq, white and raised.

- Exhaustion. I dozed in the surgery waiting for my turn.

- Incredibly painful wrists and thumb bases - probably a hangover from Christmas...

- Glaucoma. Eye pressure is fine, but the ophthalmologist says there's deterioration.

GP sending me for more tests. She is shocked I haven't seen a Rheumy more than twice over the past 30 months. (I know nothing will show up in the bloods as usual.) Where is all this coming from? I increased my Pred from 4 mg to 6mg (with GP's OK) in the hope it would resolve the exhaustion. But no joy.

[SnazzyD]

Sorry you’ve got all this. It’s difficult sometimes to know what is responsible for what. Have you looked at the FAQ’s here in the section for adrenal function? Some of these are caused by poor function when your Pred dose goes under about 8mg. Also, just a thought, is there a chance you have any dietary deficiencies?

[softekcom in reply to SnazzyD]

I am taking B12 injections, iron and calcium on prescription, Vit D & C otc ...Just don't know what to do.

[SnazzyD in reply to softekcom]

I notice you have gluten free diet in your health interests. I have to have a gluten free diet and take vit B complex because I don’t get enough of them with the lack of wholemeal grains.

Do look up the adrenal glands in the FAQ’s because a low level of cortisol from taking Pred can make one feel terrible. It is good the doctor is doing more tests too.

[Gimme in reply to softekcom]

Out of interest, what dose of Vitamin C are you taking? Those are a strange cluster of symptoms. Hope the blood results indicate the source of the problem. I am sorry that you are feeling so poorly. Hope you feel better soon. x

[PMRpro Ambassador]

Well I hope someone is a bit more switched on than the last time you posted here!! And that they don't tell you the same junk they did then. Good luck.

[Greensleeves]

I hope you pick up soon , I’ve found we experience some strange issues and never find the cause .

Even though you’re experiencing physical symptoms stress is awful for us , the more we worry the worse it becomes.

It sounds like dietary deficiencies, could be menopausal or your adrenal glands are below par . It’s unfortunate we develop PMR the same time as when our oestrogen is low .

Take care

[winfong]

There were a couple of things there that are definitely pred related:

- Repeated cold sores. I have never had them before. But over the past three months, non-stop [just because the pred reduces your immune system]

- Exhaustion. I dozed in the surgery waiting for my turn. [if you're dealing with withdrawal]

- Glaucoma. Eye pressure is fine, but the ophthalmologist says there's deterioration.

[softekcom in reply to winfong]

Apparently, pred can cause high eye pressure which then causes Glaucoma. But in my case, with the taper the eye pressure is now normal for the past 4 months. But since the last eye exam 4 months ago, there's been deterioration. 4 months ago my eye exam was fine and I was told perhaps after the next check I would be able to come off the eyedrops.The fatigue and low resistance - that's probably pred.

[Wizards in reply to softekcom]

Hi thereI get cold sores as does my sister. She introduced me to an antiviral medication Valtrex, for cold sores that you take asap once you feel it coming on. You take pills immediately then again 12 hrs later and gone.

No need for cold sores.

When I was at low doses I was so exhausted so my guess is adrenals are kicking in but extremely slow.

I also developed raised skin patches and saw a dermatologist. I had eczema which I've never had in my life. Got it cleared and never came back. Not saying that's what you have but see a dermatologist.

Once off which is almost 1yr I developed pains and rhumitologist still trying to figure what type of arthritis but obviously steroids kept it in check. So been suffering for a year to get meds.

Remember for me I was 9 yrs older so I wasn't returning to my old self. 9 yrs had passed. You maybe similar, sorry don't know how long you've been on steroids.

Do follow up with dermatologist and your gp can perscribe Valtrex for cold sores.

Best of luck

[softekcom in reply to Wizards]

Really useful info. Thanks a million!

[DogAgilityObsessed]

Others are much more able to advise but Im definitely sending positive vibes and prayers your way. I do hope things improve for you soon.

[softekcom in reply to DogAgilityObsessed]

Thank you. ❤️ I am being so careful. None of this makes sense. It's frustrating.

[BiteyDelano]

Just a thought - did you contract COVID? I had some weird skin lesions after catching it or perhaps it was the Moderna vaccine.

[softekcom in reply to BiteyDelano]

No, I've never had Covid.

[Exflex]

The cold saw virus is quite contagious and usually transmitted by contact with someone with an active infection, or from ann infected towel etc. once caught it’s with you fou life, unfortunately.

[softekcom in reply to Exflex]

Yes, i read up and it's something horrible. I had no idea. Since July, we've been using the gym for showers because of damp issues at home. (Insurance to fix it in March.) This virus has massive implications at home too. No sharing stuff any more. Extra careful now - I don't touch my face and keep my distance from my girls. No hugging over Christmas. 😕

I've also been looking at hand gels. Some only low % of alcohol, not very effective. Some brands say they are anti-virus.

[Exflex in reply to softekcom]

I caught the cold saw virus in my twenties… I’m seventy+ now and cold saws come if I’m run down, eg during a cold. At the first sign of the tell-tale tickling of the nerve ends I apply Zivorex anti-viral cream (Boots sell their own at reduced price). Just a warning if you’re unfamiliar: do not touch your eye without thoroughly washing your hands. The trouble is we touch our lips unconsciously several times a day, and the virus loves to get a hold somewhere else, even genitalia….

[Nightingales]

I started having mouth problems especially cracked sides of lips. I read that this can be a lack of Vitamin B6 (Riboflavin). It isn’t always included in B complex supplements. It’s early days but I think I am seeing an improvement.

[Nightingales in reply to Nightingales]

Sorry!

vitamin B2 not 6. I couldn’t figure out how to edit.

[S4ndy]

I know Prednisolone can cause dryness of skin, mouth etc. This could be linked to the state of your skin at the moment, certainly had an effect on mine. The thing that jumped off the page to me was the 4cm white patch on your head and your small joint pain. Did your GP comment on that at all, has anyone mentioned psoriatic arthritis? I've looked at your biography and you do have a lot going on. Unfortunately, autoimmune conditions seem to come along together.All I can say to you is keep a symptom diary and a record of how you feel and take that to the next Rheumatologist or doctors appointment. I did this and found that it gave the doctor more of an overview of what was going on so they could treat me holistically rather than each separate symptom.

It's hard to feel positive when you've got so much going on but try to find 5 mins a day to stop and try a mindfulness meditation to give you some headspace. Remember, this too will pass. Sending good vibes x

[softekcom in reply to S4ndy]

Thank you first your kind and detailed reply. The GP did send off a scalp scraping for tests and it wasn't psoriasis. The first time this happened, in 2013, it was diagnosed as a type of fungus. I was prescribed Terbinafine and it cleared. This time I have some prescription creams but they don't seem to be working.

A symptom diary is a good idea. Thanks. 👍🏾

[IlovePorridge]

Hi, sounds very much like some of the symptoms I get with Sjorgen's Syndrome and systemic schleroderma. Both are auto immune/connective tissue diseases with a long list of symptoms. Can take a while to be diagnosed. Good luck.

[softekcom in reply to IlovePorridge]

My blood test came back with marginally raised RF at 22. A couple of the things the GP mentioned were Sjogren's and Lupus.