Does reducing Prednisolone cause increased headaches?

[Yorksman]

I'm currently on 12mg having reduced to this level over several months. This appears to be my balance point having found that going lower increases pain, however at 12mg I have now started to have headaches for most of the day which I did not have before at a higher level of Pred. Does this suggest that I have reduced too far and will returning to a higher dose reduce my headaches?

[DorsetLady PMRGCAuk volunteer]

Headaches are not usually connected to PMR as such....have you tried paracetamol or similar (not ibruprofen) to see if they help? Or do you have GCA? If so, that's a different matter. Probably need to be checked for that.

Have you done anything to your neck or shoulders recently that could have caused headaches and its just coincidence?

On the matter of pains f=returning below 12mg, you might find a slower taper and small steps (i.e. 0.5mg a time) help.

These give a choice of tapering - after you have got the headaches sorted...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Yorksman in reply to DorsetLady]

Thanks for prompt reply and links to taper plans . Have done nothing to hurt or strain my neck or shoulders. I would like to find the cause of the headaches rather then take painkillers. There is mention on other posts about headaches which suggests there may be some connection with Pred. Any thoughts about my increasing to say 12.5 or 13mg to see if headaches reduce otherwise I seem to be stuck with them.

[DorsetLady PMRGCAuk volunteer in reply to Yorksman]

By all means try 13mg to see if that helps - a few days should tell you. But if it is a Pred side effect (which it could be) one would expect it to have happened early days, and reduce as you taper, not the other way around...

If an increase does help then maybe you have your answer, its it doesn't, then I would go back to 12mg and try painkillers... it could a steroid withdrawal symptom.

see this link -

healthunlocked.com/pmrgcauk...

i can understand you want to know the cause.. but sometimes it takes a bit of

"suck it and see"!

[Yorksman in reply to DorsetLady]

That confirms what I thought - I'll give it a try. Also the information in the link you sent is really useful.

[jinasc]

Looked at your profile and there is no information ie

Date diagnosed, Pred dose started on and what you are on now. any other illnesses and/or meds. This helps us to answer your questions a bit better.

In the meantime, have you talked to your medics about this headache, is it one-sided etc?

Were you told the symptoms of GCA and what to watch out for - if not take a look at the FAQ section and read.

I am assuming you have a full head of hair, if so, try this, spread your fingers through your and gently tug all over, (bit like Shiatsu) every hair has a little muscle attached to it and sometimes with PMR those little muscles ache because the oxygen supply is impaired.

[Yorksman in reply to jinasc]

Thanks Jinasc, it's more of a 'thick head' feeling than a proper headache and affects my concentration and thinking. I'll have a look at the FAQs and try massaging my head.

[DorsetLady PMRGCAuk volunteer in reply to Yorksman]

Sure it's not dehydration?

[Yorksman in reply to DorsetLady]

At first thought it might be but unlikely as I drink sufficient water.

[PMRpro Ambassador]

If the headache gets worse, localised or won't go away with paracetamol, take notice in case it is GCA developing,

[Yorksman in reply to PMRpro]

Thanks, what symptoms do I need to look for?

[DorsetLady PMRGCAuk volunteer in reply to Yorksman]

In my experience GCA headaches are like no other you’ve ever had…and tend to gradually increase in longevity and severity. But GCA can start with tender scalp, earache, jaw claudication (hurts when you chew, stops when you stop chewing), maybe neck snd shoulder issues. As you’ve had these headaches for over a month then further investigation required methinks.

[pomeranion in reply to PMRpro]

Just a quick question. Trying to taper from 60mgs. to 59mgs.per week per GP. Every time head, neck, scalp, arms and shoulders become inflamed. The headache really throbs. I took another 9mgs. pred but didn't help. I know it is the GCA. I will try the paracetamol. What dose and how often?

[PMRpro Ambassador in reply to pomeranion]

No idea - but if paracetamol helps it is unlikely to be the GCA, or, alternatively - if it is GCA paracetamol probably won't help.

I assume you mean 60 to 50? How quickly? Even at those high doses 10mg is a lot in the early days, Try 5mg and see if that works. How long have you been at 60mg?

[pomeranion in reply to PMRpro]

I have reduced from 60mgs. that I have been on for 2 months. My GP suggested I reduce by 1mg. to 59mgs. for a week. So far, I have tried this twice and both times the headaches, neck and scalp symptoms return. The throbbing is incessant. I will try the paracetamol at 1000mgs. per bottle instructions every 6 hours. I will finally be seeing a new Rheumatologist on July 26th. Hopefully, I will get some answers. I really need to reduce my prednisolone use not increase it. How has the Actemra been working for you? I don't know if that will be an option for me. I live in the U.S. Also, my insurance may not cover it. All your suggestions are appreciated.

[PMRpro Ambassador in reply to pomeranion]

There are some improvements for me but some is difficult to tell because of the tendonitis in my ankles tht is making other things sore!

I know I often say even 1mg can make a big difference - but it is concerning that it is doing so at such a high dose. Not long to the rheumy appointment now - which is a relief.

[pomeranion in reply to PMRpro]

I'm sorry to hear about the tendonitis. My sister had her tendon repaired. The Dr. said it was the prednisone she was on for her PMR for a year. She came through it well. I hope your other sore things work themselves out. I appreciate your concern about the high dose and the modest reduction not resolving my symptoms. I'll just keep on plugging as they say and continue to rely on this forum for all the support everyone offers.

Please relay my sympathy to all suffering with the extreme weather.

The President here is trying to push through climate policy's but meeting resistance because of the high inflation rates. I fear what we are leaving for our children.

[piglette]

Have you done a Covid test as that seems to start with a headache in a lot of people?

[Yorksman in reply to piglette]

Thanks, It's not Covid, had it for over a month now.

[Kendrew]

Hi Yorksman,

Firstly, I must support all the advice already given, to have your headaches checked out professionally before making any other kind of assumptions, but I just wanted you to know that I have always had intermittent headaches/ pain whilst on Prednisolone, particularly with each taper and more so from around 10mg down.

They unfortunately seem to have been a side effect I hadn't expected so I

I had them checked out comprehensively by both the rheumatologist and a neurologist. Thankfully in my case it was not GCA.

It's not necessarily usual to experience persistent headaches as a side effect of pred but I certainly have. They do seem to have settled down again for now, but I know they can still return again from time to time.

[Yorksman in reply to Kendrew]

Thanks, good to know I'm not the only one.

[PMRpro Ambassador in reply to Yorksman]

Doesn't matter what your problem is - you are very rarely the only one fighting it!

[Yorksman in reply to PMRpro]

That's true, now getting lots of help and advice

[Jackoh in reply to Kendrew]

Yes that’s my experience too.

[Yorksman in reply to Jackoh]

What sort of headache do you have ? Are they like a 'thick' head when you have a cold or really painful. Do they come and go during the day? Mine are there all day very faint in the morning then increasing until early evening. Sometimes I'm aware of them and cannot think or concentrate and sometimes they are just there and have almost no effect.

[Jackoh in reply to Yorksman]

I’ve always had headaches to be honest before PMR but these are mostly on the top of the head and when I’m reducing they make me feel a bit disoriented and the whole head can feel fuzzy.They are worse about 4/5 pm. I also can have earache usually in one ear when reducing and when I’m stable on a dose the ear ache goes. I also take Amitriptyline at night for peripheral neuropathy and this certainly ,I feel, has helped with the headaches too. I also sleep with a very small pillow under my main pillow so that space between pillow and bed is a slightly graded slope, if that makes sense. This has helped too.

[Yorksman in reply to Jackoh]

Thanks Jackoh, I do the same and sleep with my pillows on a slope. Seems to reduce the headache when I wake up. It then increases mid morning and reduces by late afternoon.

[Yorksman in reply to Kendrew]

Hello again, it's interesting that your headaches started at 10mg as that's when mine started. What sort of headache did you have ? Were they like a 'thick' head when you have a cold or really painful. Did they come and go during the day?

Mine are there all day very faint in the morning then increasing until early evening. Not painful just an ache. What tests did the rheumatologist do to find the cause?

[Kendrew in reply to Yorksman]

Mine are often much easier in the morning and often more uncomfortable in an evening. They can manifest in several ways but generally it's more of a dull, thudding ache that would start at base of skull, work up behind ears and over top of head down to above eyes and sometimes the temple area too. Occasionally I'd experience little sharp electric shock type pains that would shoot around cranium an they would come and go both throughout the day and for whole days at a time.My rheumatologist (Prof Dasgupta- one of the leading authorities on PMR/GCA) examined me, palpated the scalp asked me lots of questions and said my symptoms were not presenting as GCA so referred me to neurologist who again asked a myriad of questions, examined me and asked me to execute a set of physical actions which all suggested I had occipital neuralgia, aggravated by a severe fall I'd had a few years previously when I'd fractured my spine. A scan and blood tests were done...all normal.

I still experience them from time to time but they seem less frequent and less troublesome now I'm on 5mg pred.

[Yorksman in reply to Kendrew]

We seem to have different headaches, mine start in the morning and reduce in the evening. Pleased to hear you are down to 5mg.