Do I go up again?

[Willow33]

Hi all been on 20mg pred for 5 days and thought I was doing well, but my headache and tenderness has come back so I have gone back up to 25mg with no relief, I really didn’t want to go back up to 30mg would anyone think taking an extra 2.5mg would make a difference.

[PMRpro Ambassador]

If 25mg is what you need and the inflammation has built up you might need a few days at more just to clear it out - or longer at 25mg to sort it. You can only try.

But reduction steps are better at 10% of the current dose - so now 2.5mg steps are more than enough. 2mg better,

[Willow33 in reply to PMRpro]

Thanks for the advice

[Blearyeyed]

I'd suggest that you see or speak to the GP via phone appointment first just to let them know what you want to do , to get their approval and advice , they may want to check your inflammatory markers with blood tests before you continue to increase to get a record of what is going on.

In the meantime rest and pace your days carefully.

Are you taking or have you tried also using the standard dose of Paracetamol through the day as well as your steroids yet?

It may help you work out if all the head pain is PMR/ GCA related or if some is nerve / migraine related.

Also try increasing your fluid , Vitamin C and electrolytes ( Magnesium/ Potassium , possibly Sodium unless you require low sodium for your health) this can help reduce the side effects and some of the pain symptoms we all suffer from all sorts of Chronic Pain illnesses.

Take care

[Willow33 in reply to Blearyeyed]

Hi yeah I have had paracetamol regularly for the last few days and it hasn’t touched the pain

[Blearyeyed in reply to Willow33]

You really need to see a Doctor on Monday morning , they may choose to contact the Hospital and either send you in to be checked or get their approval to put you on a higher dose. 30 mg is the higher dose for PMR but it does need approving .

Had you been trying to continue to do business as usual and keep up all your activities like before PMR whilst also getting used to the medication and reducing the inflammation , this can affect how quickly you respond to your medication and cause a rebound of pain , especially during the first month.

The Pred is only there to manage and control the Pain and inflammation rather than being a Cure.

See that Doctor xx

[Willow33 in reply to Blearyeyed]

Yes I have been working the same, apart from when I have appointments. Although I only work 20 hours a week I am exhausted at the end of each shift. I will either try and speak to the consultant or GP on Monday

[Marijo1951]

If you're having a flare of GCA I think the best advice is to go to A&E at the hospital where you're being treated, give your hospital number and ask to see one of the rheumatologists. This is what I did when I was at a similar stage and couldn't get below 25 mg without a return of symptoms. I was thoroughly examined with input from an ophthalmologist, my pred was increased and I was also prescribed methotrexate which I've been taking ever since without major flares when I taper my dose. There is some controversy about methotrexate but I haven't had any bad side effects. Whether or not you end up taking methotrexate, given the risks involved with GCA I think you should be seen by a specialist.

[Willow33]

Ok thanks for replying

[jinasc]

Willow

I see from your profile you joined in Dec 2019, 4 weeks after you were diagnosed with GCA.

You are now down to 20mg and back up to 25mg, that is a very fast reduction for GCA, Just over a couple of months.

You need to be pain free, no GCA symptoms at all. So you really need medical advice, but as it is the weekend, up to 30mg and stay there until you see a medic.

However if you experience any blurring, even for a second or two or the headache increases................A&E for you - your eyesight is precious .

If it is any help to you, I had GCA (now into remission) and I started on 60mg in the Feb and it took me till November 9 months to get down to 20mg.

I won't go into the rest of the journey, except to tell you, it is not uncommon to experience a flare when you are reduce to quickly. The golden rule of no more than 10% at a time - I can't do the math for you as I do not know if you started on 60mg or 40mg.

[Willow33 in reply to jinasc]

Hi I started on 60mg on the 1st November 2019, but my rhumetologist gave me a list of dates and how much to drop by, she has me down to 10mg by the middle of February but think I will be struggling to be that low by then. May have to try and contact her before, thanks for the advice

[Hidden in reply to Willow33]

I really can't believe that reduction! Sorry nothing more constructive. If any symptoms are appearing then it should stop.

[Marijo1951 in reply to Willow33]

I started on 60 mg per day when I was diagnosed in July 2017. I had the flares that I mentioned just after Christmas that year. At that stage I was trying to get below 25 mg. I agree with others that you seem to have been expected to taper too quickly.

[PMRpro Ambassador in reply to Willow33]

Crackers - GCA remains pretty active for the first 18 months and often flares. And the primary reason for flares is reducing too far and too fast.

Like jinasc - I don't like the cut of her jib at all. If she doesn't involve her patients and allow them access she is failing in her duty of care.

[jinasc]

I do not like the sound of your Rheumatologist at all. A list of dates, hopefully with a direct contact number to her Secretary.

If she think this is a swift journey, she needs to read or re-read the new guidelines, if she ever read the old ones. You can read and download them, just look at the pinned posts on this page and click on New Guidelines.

You cannot wait till February you need to contact her last yesterday. Willow these are your eyes, the only ones you have.

Sorry if this sounds harsh, but GCA, is not to be messed around.

PS It would be good idea to print those new Guidelines, two copies, one for her and one for your GP. She should get them direct from the BSR - but who knows.

[Willow33]

I have found she isn’t the easiest to discuss things with and no direct number given no. I will phone the hospital and ask to be put through to her secretary, hopefully be able to see her soon, I don’t think she realises the urgency as I saw her on the 15th November and she has only just last week referred me to the eye clinic. Lucky for me my optician had already referred me and I was seen straight away in November.