Headaches!

[Tescohednesford]

Hi everyone.....I'm started my PMR journey middle of January so have only been on Prednisolone for 6 weeks...

I started on 20mg and now on 10mg I did up dosage for 2 weeks so was taking 12mg because I felt poorly...

But my question is I've had a headache almost constantly for weeks....is it the press? Or the condition?

My Dr whom I saw 2 wks ago and I don't have an appointment to see .....insists it isn't anything to do with GCA as I can comb my hair and touch my scalp...

My eyes are affected too but opticians say my eyes are good but I'm developing cataracts...

I'm taking over the counter eye drops to help....

Sorry it's long.....

Only ppl I can ask questions if....

[Sharitone]

Seeing as nobody else has got to this yet, I'll add my penn'orth.

I guess it's GCA you're worried about? You do not necessarily have a sore scalp with GCA. I didn't.

Do painkillers have any effect? GCA headaches do not usually respond to them.

What is the sensation you have with your eyes? People who have this symptom say there is a blurriness, sometimes on one side of the eye.

You may well have headaches as a result of taking prednisolone - check the PIL.

Your reduction of pred has been quite fast.

If you are still concerned that you have GCA, then it is potentially an emergency, and you should get medical help straightaway.

[Tescohednesford in reply to Sharitone]

Hi, the opticians did a scan of the eye and said it all looked good....Dr said that the scan wouldn't show anything...The headache is almost constant... I'm just used to it....I haven't taken any paracetamol as tried to do without any extra meds....but I will try that today...

I always take my Pred first thing in morning and my headache is always there before any meds.

I'm away this weekend and have thought about taking extra steroids with me just in case...

The eye problem just feels I have to keep blinking to clear them....and my eyes always look swollen...

[PMRpro Ambassador in reply to Tescohednesford]

Sounds like dry eye problems - get some good eye drops for dry eyes from the optician or the pharmacy. And use them at least 2x daily and consistently, especially before bed. There are also liposomal sprays to use on the outside of closed eyelids which I found very handy when out and about and they don't blur your vision as some eye drops can.

Was that the GP who said it wouldn't show anything? It could - one effect of GCA can be that there is longterm reduced blood flow to the optic nerve, and that can show up as a swollen and pale optic disc where the optic nerve joins the back of the retina. It isn;t always obvious and there are other causes of AION

eyewiki.aao.org/Arteritic_A...

medicalnewstoday.com/articl...

[Tescohednesford in reply to PMRpro]

I bought some eye drops yesterday...and a mist for the eye lids...I will use them at least twice a day as you said.

Thank you.x

[pog165g in reply to Tescohednesford]

Hi I get the same headache my Rhumy sent me to a neurologist said headaches that come on and do not go way are common in the over 60s, he did loads of tests and a brain scan and found nothing. he put me on sumatrapan for migraines which ease it, but its still there, you start to get used to it and tend to blank it out, Hope you get a resolution

[Tescohednesford in reply to pog165g]

Thank you....Painkillers did work but only for short time and I still had dull ache ....

[Flosy in reply to Tescohednesford]

Hi.ive had headaches and get blurred eyes aswell,but I am not steroids any more,haven't been for ayear.have been told it is sometimes after affects.did get it when l was on them.take care.

[DorsetLady PMRGCAuk volunteer]

Looking at previous posts you did say this was your tapering -

I started at 20mg...After 2 weeks it went down to 15mg.

2 weeks down to 10mg.

As we said at time much too fast a taper… so reading

10mg I did up dosage for 2 weeks so was taking 12mg because I felt poorly...

Who suggested that it did you do it yourself and did you feel any better?

Had you asked us we would have recommended going up to 15mg. and probably staying there for a month.

Overall would say right horlicks…. by GP that is ..obviously doesn’t understand PMR.

We may have asked before, but any chance of seeing another one?

As for headaches-any pattern? Time of day? Specific time after Pred?

Not sure GCA can be totally ruled out just because you can brush hair… but other things need to be checked.

[Tescohednesford in reply to DorsetLady]

Hi Dorset Lady, you did help me before...I took the extra 2mg without informing Dr...and felt better..

Headache is constant but because I'm suffering from insomnia I keep blaming that.... always tired.

I take Pred first thing so notice no difference....

When I wake in the night my headache is there....and it's still there now...but I do forget about it in the day...

I'm going to try and take paracetamol see if that clears it.

I'm going to start logging what's happening...but I'm not sure if I told you before...when I explained to Dr... sore mouth and tongue...eyes.... peripheral neuropathy... insomnia...he almost glazed over and so I asked him if he knew much about PMR...his reply...Yes i have at least 2 cases a year....

Lord send me help..

[DorsetLady PMRGCAuk volunteer in reply to Tescohednesford]

Lord send me help..

Not sure that's a possibility, but anything would be better than current GP.

As you are developing cataracts are you sure you aren't straining your eyes- that causes headaches... but shouldn't occur during night.. but of course it could be lack of sleep as well.

Think you need to keep a diary... and maybe return to 15mg for 2 weeks... to see how you are, and then drop back down either way - to 12.5mg for a week or so, and then to 10mg. it will give you ammunition if nothing else to tell GP.

Any chance of getting a one-off appointment privately with a rheumy?

[Tescohednesford in reply to DorsetLady]

I have started to log from today...Tbh DorsetLady.... I did think about asking about a referral...

It would be nice just to speak to a professional who understands the condition and may be able to offer advice....

My first Dr who I saw gave me exercises until I questioned him on what he thought I was suffering from.....

The second one as nice as he was...just ordered blood tests but I can't get to see him (non emergency) for 8 weeks...

[DorsetLady PMRGCAuk volunteer in reply to Tescohednesford]

8 weeks is awful -saw something yesterday about Dorset being bad for GP appointments but they mentioned 2-3 weeks… 🙄

NHS rheumatologist is likely to be a long wait -but sometimes (although we shouldn’t have to) privately is the only way…

Good on diary..

[PMRpro Ambassador]

"it isn't anything to do with GCA as I can comb my hair and touch my scalp."

What a daft comment from a doctor!!! That isn't enough to rule out GCA - some people have NO symptoms at all before visual problems, it isn't common but it happens.

DL has said everything I would say so won't repeat it. Other than to say that sometimes crazy attempts at reducing the dose rather than tapering can lead to a lot of strange effects which are hard to sort out.

Has the headache been constant or does it vary at all? Did you have it BEFORE you started pred?

[nallufl24]

I get so angry with doctors who say it can’t be GCA because of this or that. I had everyone baffled because I did not have scalp tenderness, jaw pain, or vision problems. I did have a headache that painkillers didn’t help. I had a feeling of malaise and depression. A biopsy confirmed it was GCA.

[PMRpro Ambassador in reply to nallufl24]

At least they can't argue with that - but you have to be able to get that to start with.

[Tescohednesford in reply to nallufl24]

That sounds so like me ..I did the chewing gum test...nothing.

I'm getting paranoid that I'm making everything up..

[PMRpro Ambassador in reply to Tescohednesford]

It isn't that you are making it up - but there are multiple potential causes of many of the symptoms.

[IlovePorridge in reply to Tescohednesford]

I feel your pain and frustration. Has anyone ever mentioned Sjorgen's Syndrome to you? I have several of the symptoms you mention and my rheumatologist has diagnosed Sjorgen's. I am seeing a second rheumy in a couple of weeks as my GP, respiratory consultant, and I, believe that I also have Systemic Sclerosis. I do hope you get the answers, and treatment you need, soon.

By the way, do you live in Hednesford?

[Tescohednesford in reply to IlovePorridge]

No not Hednesford but I worked there from when it opened..Live Burntwood!!

[IlovePorridge in reply to Tescohednesford]

I know the area. I was born in Cannock. Good luck with diagnosis and treatment.

[Tescohednesford in reply to IlovePorridge]

Thank you.....x

[Caloo650]

I was finally diagnosed with GCA after a month of exhaustive tests for eyes and head. I had a constant headache, worse at night. I had blurred vision when I tried to focus on anything close up. The only thing that fixed it was a high dose of prednisone. PMR came along 3 weeks later.