Off the wall side effects??

Hi, amkoffee.

I never thought about thrush with the sores in my mouth.

I need to research what to do for thrush.

I have Sjogren's  Syndrom. That was my st. diagnosis, then came the GCA, PMR, and the occipital nerve.

It just never ends.

My head was hurting all night last night. Had to sleep in the reclining chair.

This morning I had ice on my head for 2 hours. Ice seems to help some.

Hi darlene, as I type this, I too have an ice pack on my head! I feeel your pain. I had thrush as a child before I had tonsils out. Don't remember too much about it though. All I know is my mouth Always feels hot, my tongue has painful bumps on it, and sometimes I can't taste food to well! Ughhh...crazy times!

...just typical joint pain and stiffness. I think I'm gonna call Rheumy on Monday and see about going back 2 10mg. You all seem 2 think I may have tapered off a bit too quickly from the original 15mg and at this point I'm feeling more confident in info I'm gathering from this forum than anything else! Thanks for that! Btw...what's difference between pmr and GCA?

PMR is the muscles and joints pain and stiffness mainly in arms and legs. GCA, giant cell arteritis, is very closely related but it affects the arteries in your head and neck. That can cause headaches, jaw pain especially when eating, scalp pain and visual symptoms (blurriness and even loss of sight) as well as sweats, a fluey feeling and PMR type symptoms.

One in 6 patients with PMR go on to develop GCA so all patients should be warned to watch for the signs and report them to the doctor immediately. Any patient with PMR who develops a severe headache needs to get it checked out. 

https://patient.info/health/polymyalgia-rheumatica-leaflet

https://patient.info/health/visual-problems/temporal-arteritis-giant-cell-arteritis

Thanks 4 ur explanation of pmr v gca. I'm beginning 2 think I may of been mis-diagnosed. I'm feeling as though I most likely have GCA, as I seem 2 have more of those symptoms ie head&neck pain, double vision in right eye, as well as the stiffness and joint pain! 😟. I really need 2 contact doc tomorrow. Is there anything different they do to diagnose this?? I'd appreciate any feedback! Thx so much 2 everybody.

Not much different in treatment - just a high enough dose of pred to manage the GCA symptoms. But yes - it is important to see a doctor asap if you have visual symptoms. It isn't really a misdiagnosis - PMR is a symptom of GCA too. They can do a temporal artery biopsy - but it isn't always positive even though the symptoms are typical of CA - it may not be affecting the bit of artery they look at. Symptoms are ALWAYS trumps!

Ohhh MAN!! This is getting more complicated and confusing every day! Hard 2 keep up. Don't even mention biopsy...not ready 4 that! 😖

Hi Lynda

Today I went to see my GP, as I have a strong suspicion that I have developed GCA. I have ear ache, sensitive scalp , pains in the temple region. 

My GP started to read the latest regarding

GCA and said that there was no point to do MRI  or biopsy ( which I suggested) as the 

Moment I have been on high doses of prednisone for longer than three weeks the results will come back negative. 😩

In the meanwhile she has given me a referral 

to see a neurologist, which I shall do on the 

20/8/2018. 

Eileen, have you heard of this before, regarding taking Prednisone that biopsy and MRI will come back negative  ?

I couldn't bear the thought of upping the dose of prednisone to 60-80mg after managing to reduce to 18mg after 3 months. 

It will certainly have reduced the likelihood of getting a positive result - and since the biopsy is only positive in less than half of cases it does seem a bit pointless. An ordinary MRI won't show anything and after so long on pred nor would PET-MRI. It will depend on the symptoms for a diagnosis.

Why on earth a neurologist? GCA is a vasculitis - nothing at all to do with neuro stuff. It is a rheumatologist you need, or an ophthamologist (eyes). And the 20th is far too long if you are showing GCA symptoms. GCA is a medical emergency - like a heart attack or stroke, you wouldn't be told to wait over 2 weeks for that would you!

If it is caught quickly - like the next couple of days - then you may not have to go up to above 60mg. 40mg is a perfectly usual starting dose for patients who don't have visual symptoms - and if you DO have visual symptoms then your sight is at risk and it doesn't matter what dose - it is worth it.

Hi again...this excessive sweating is Really getting to me. I don't even want 2 go anywhere anymore as I'm always hot and sweaty! I'm going on a plane in 2 weeks ( 2 Texas! Ugh). Any suggestions??

My biopsy came back negative.

Was on 60mg. of prednisone at that time.

My rheumatologist said I had too many symptoms of GCA and PMR and has treated me for it for a year.

I already knew I had it even without the biopsy.

I also have Sjogren's Syndrom.

Be sure to see the neurologist.

I had/have severe headaches & burning/tenderness of the scalp.

The neurologist knew on my 1st. appt. that I was also dealing with "occipital neuralgia" she said the occipital nerve and GCA are closely related.

I've been getting nerve injections (in the back of my head) now for appx. 3 month's and it has helped tremendously. I do sometimes get a bad headache & set with an ice pack on my head for 2 or 3 hours.

I'll take an occasional headache over the daily headache I was getting any day.

What I'm getting at is it's important to see the neurologist.

Best of luck to you

Lightweight layers - and maybe sports functional clothing? It hasn't been so much of a problem for me so I don't really have many ideas. Some people have found tennis headbands and wrist bands helpful. 

You will need to take a prescription antifungal medication. The most common one prescribed in the US is called Nystatin. It's a mouthwash that tastes terrible. You rinse your mouth with it and then swallow it.  Yuk! I won't use it anymore. Not since I found out about clotrimazole 10 mg troche 5 times a day. Its a tablet that you suck on until it's dissolved. It taste like candy, like a sweet tart without the tart, and works at least as good if not better. I was having so many problems with thrush that my doctor finally put me on one of these every day after dinner. My tongue is so much better now and I have not had a case of thrush since doing it this way.

Did you know that Sjogren's Syndrome can also cause joint pain in some people.

I'm just wondering...If you lose your sight from GCA can you get it back by starting a high dose of pred? 

Eileen thanks for your intel. 

Thank goodness my eyes are not affected. I have swelling behind my ears  and part of my forehead, also a deep channel coming down from my scull..about a finger deep. 

I think my GP is worried about taking any chances and responsibility...she missed a malignant tumour I had a couple of years back and caused me a lot of stress. 

This is the earliest I can get to a neurologist..

If I feel any changes then I'll go to the emergency department at the hospital. 

XX

Lynda

Did you try the toweling around your neck. It does help dear. 

Also to wipe the sweat away, it's good..

Don't let a little sweat confine you to your home. I have the same problem as I mentioned to you earlier. 

Not going out will make you more anxious and depressed, pretend you have just returned from a swimming lesson.. ;-).  ;-). hence wet hair. 

Keep a bottle of water with you and keep drinking. You must replace what you sweated out. 

Good luck cyber friend, stay strong. 👍

Thanks! I like "cyber friend"! Makes me feel really connected.😁So easy 2 feel somewhat alone when no family or friends are experiencing same symptoms. I'm so grateful for this forum!

You must look at pmr as a set back and not a defeat.  

There IS a light at the end of that dark pmr tunnel. 

Keeping positive is half the battle. 

Have a nice day dear, and keep us up to date how you are coping. 

Cyber hugs. 

Only if the pred is started within an hour or so and even then there are no guarantees. Sight loss is usually a sign of irreversible damage to the optic nerve and nerves are notoriously poor at regeneration. Even if the visual loss is only in one eye the rate of sight loss in the other eye in the following couple of weeks is very high - I have a friend on another forum who did lose the sight in one eye, was immediately put on 80mg pred and the other eye was OK, but she says the two week wait to know was the longest 2 weeks of her life.

That's why we say that ANY visual symptoms should be reported to the doctor and, above all, any even fleeting loss of vision should be treated as a medical emergency. Amaurosis fugax is the equivalent of a TIA (transient ischaemic attack) but specifically affecting the optic nerve. TIAs are very often a warning of a stroke to come - the loss of vision could also be the sign of a stroke so must be taken seriously whichever it turns out to be.

I've had my share of visual issues. When I had my first stroke 4 years ago it only effected my vision, making me see double or kind of cross-eyed. Fortunately it didn't stay that way. Then I had two other visual incidents that were deemed an optical migraine with no pain. I've also had a TIA 2 years after my stroke but it did not effect my vision fortunately. With my history I treat any visual disturbance very seriously. After the experience I had once with a nurse practitioner accusing me of making up the disease I hope I am never faced with the need to go to the ER and try to explain to them that I need a biopsy.