Pain

[Devoid]

Hi just wondering if anyone else with large vessel vasculitis finds the only way to reduce the pain is lying flat?? Nothing else seems to help me, it doesn’t make me pain free but at least bearable, my worry is what damage the pain is causing!!!?

[Chrisellie]

Hi Devoid.

Your profile shows suspected GCA. Are you on any medication? What sort of pain do you have? You will get lots of help on the PMRGCA section of this website.

Is the pain in your chest?

[Devoid in reply to Chrisellie]

Have had ct pet scan and large vessel vasculitis is the diagnosis seen in aorta and large vessels off , on pred now 30 daily and week 3 of methotrexate. Pain is in chest,neck,left arm and left side of neck, not joint pain, swelling in face, neck ,collar bone area

[Chrisellie in reply to Devoid]

I also have LVV of aorta ,GCA and PMR, etc.

My initial pred was 40 mg which took all pain away. I had the usual dizzy, numb etc feelings from pred but no pain.

Is the dose you are on high enough?

Some say Methotrexate can cause other symptoms and doesn't always help, butI haven't been on this steroid sparer.

I am on Tocilizumab weekly injections with pred reduction which has worked well so far.

Sorry I cant help, what has your doctor or rheumy said?

[Devoid in reply to Chrisellie]

Waiting for the consultant to ring. Started on 40mg of pred but never pain free, then quick reduction prior to scan, just don’t seem to be improving other than perhaps my legs feel less jelly like, but any movement of legs or left arm increases the pain in upper body

[Devoid in reply to Chrisellie]

Just read your profile,so pleased to say that gives me hope! Trying to get appointment in specialist vasculitis clinic, are you seen just locally or do you go anywhere else?

[Chrisellie in reply to Devoid]

My main clinic is 12 miles away but am seen by vasculitis specialist nurse for biweekly bloods and questions etc locally, 3 miles away.

I hope the consultant can possibly try upping your Prednisolone to see if that helps initially. If it does then that will be the starting point to very very slow reductions to prevent flares.

Keep in touch and stay positive, i know it can be hard.

[Devoid in reply to Chrisellie]

Hi can I ask how soon into treatment did you start to feel anything like normal? Particularly energy wise and mobility?. Unfortunately due to problems with my left arm the consultant has put pred back up to 40 and I am also on methotrexate now 20 . Still struggling with pain in upper body with any sort of exertion, actually just being upright! . Waiting for the results of scan I had this week to look for any blockage,narrowing.sorry so wrapped up in myself!!! Hope things are going well for you

[Chrisellie in reply to Devoid]

Hi

I was on 40 mg pred for almost 3 months when I started Tocilizumab. Then started reduction.

I lost all aches and pains and was very happy , day 1 and then the pred symptoms kicked in. At the time I wasn’t sure if it was the illnesses or the pred. that made me feel yucky but I am now pretty sure it was the high pred dose. The fuzzy head was a very annoying symptom but was a lot better on 10 mg. on 7 mg Idid start to feel very anxious but think this was adrenal related. My story was very good and bad and up and down but no aches which was great. I am having a little wobble at the moment, on 2 mg but unsure what this is and if temporary.

Energy around 3 months on Toc.

Have you been pain free at all ?

Hope the scan results show something that can be helped easily.

[Devoid in reply to Chrisellie]

No I have not been pain free as yet, early on we had a lot of stress and travel due to 2 bereavements , but the last month I have been able to rest and take each day as it comes, but don’t seem to be making any improvement, go for a walk most days but this can be difficult

[Chrisellie in reply to Devoid]

Always difficult to give ideas of hoe to help others. Perhaps the 40 mg wasn’t and isn’t enough. Perhaps you needed to be on a high dose for longer until things settled. I take it your bloods have been ok ? The pred will have probably hidden any inflammation if there is any. But seems symptoms are more important that bloods.

Can you still bend ok ,put on shoes etc?

Chest pain etc has remained a little but mainly in evening when sitting on sofa.. These illnesses are horrible. Hope you don’t have any underlying problem as well.

Just checking heart with a ECG tomorrow.

Take it slow and steady.

[Devoid]

No real joint pain, it’s all in chest,arm side of neck and head,and limbs only work if they want to, the fatigue just comes out of the blue. Bloods are now all ok but crp has been 101 , so think some damage has been done