Hi I am very upset.Its 12months since I've been on prednisolone for a relapse of Temporal Arteritis.Needed 92mg to get it under control.Because of health issues and my husband passing away I went very slow and stayed on 25mg when things were very stressful.When I got down to 17.5mg I had a relapse and increased to 20 again.I am still only on 18mg.My head is exploding .My vision is terrible and I am extremely tired and chest pain.But my GP says its the Pred doing it wants me to reduce fast as in 1mg /week .My cardiac spec wants me to reduce that fast as well.I have voiced my concerns about adrenal crisis happening to me (it has happened)but it is falling on deaf ears.I am really frightened and I don't know any other Dr to go to.I don't feel safe.Could someone send me the slow tapering protocol .Maybe I could print it off and leave it with them and the Risks of fast Tapering.
Many thanks.
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Raewynne
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I looked at your profile but it has not been filled in. Could you please do this. I find it difficult to help someone without knowing location, ie UK or elsewhere. When diagnosed etc.
I am sorry that you have been through such an awful time on top of being so ill. I send condolences for the loss of your husband.You needn’t worry about your Adrenal function until you get down to around 7 mgs of Pred. Your Cortisol needs are being met by the steroids you take. I am surprised that your doctors have not prescribed steroid sparing drugs to ease your emergency reduction, such as Methotrexate or Tocilizumab. You really need to be supported better than this and to ask about steroid sparers. Do you have a friend or relative who can be with you for your next doctor’s appointment, to help get your fears across and to help you understand their plan for your treatment?
To the right of your screen you will see pinned posts about tapering. Have you ever seen a Rheumatologist? In the U.K. cases of GCA are normally dealt with by these consultants. This maybe a way of getting more compassionate treatment. Let us know how you get on. You sound understandably, very anxious, that will be compounded by Pred and may need separate medical attention.
Hi, Sorry to ask questions when all you want us answers but -
“My head is exploding .My vision is terrible and I am extremely tired and chest pain.But my GP says its the Pred doing it....”
What do you mean by my head is exploding? What exactly do you mean by vision is terrible? What sort of chest pain?
Just trying to work out if GCA symptoms or Pred side effects - fatigue is probably a bit of both.
As S/Jane says not adrenal crisis - too high a dose of Pred. Plus you need a Rheumy to oversee your GCA, not a GP. You also need to get things under control before you consider any reduction.....
...another good suggestion from Jane, you need someone to advocate for you...family/friend?
Tapering- from 20mg - 2.5mg or 2mg (depending on tablets size) a month down to 10mg - but only provided no issues....... certainly not 1mg a month.
Hi Dorset LadyMy head has dreadful pressure.Has been a constant issue while reducing prednisolone.My eyes.Prednisolone induced glaucoma.I have seen an eye specialist .He wants to put stents in to reduce the fluid build up.
My heart had been weakened by prednisolone .I now have a "cardiac history" pre-empted by prednisolone.Plus all the other things that prednisolone can cause to flare up.
The Dr wants me to reduce 1mg per week which I am finding scary as I am not travelling too well.
Oh dear....you do seem to having a lot of issues.....so can understand doctors stance on Pred.....
...as S/Jane asked, have you been considered for a steroid sparing drug.... of course it means another drug into the mix, but if it helps you reduce Pred it might be worth it.
Are you under auspices of Rheumy? You really need best advice on issues.
I will enquire about Steroid sparing drugs.He just told me to increase painkillers instead of Pred if I relapse which I am not sure is a good idea as my liver is not too flash .How do Steroid sparing drugs work.?Are there side effects?
Well the main aim is to enabke you reduce the Pred more quickly.....but they do have side effects...sorry, but I cannot advise never took them myself.
Hopefully those that did/do will advice.......but if they do get suggested it might be worth raising another post asking....or searching for relevant posts - try
MTX, TCZ or full names Methotrexate or Tocilizumab
Yes .It is very Upsetting being bullied like this.I know it will affect my health .I'm trying so hard to keep on top of things and I know I have to listen to my body. Increasing my anxiety levels does not help and Iam very angry that the medical profession is instrumental in this.It puts me at risk.My inflammation levels go up .
Agree with what had been said. You need to see an expert on GCA. In most places that is a Rheumatologist. Some places a vascular specialist. You have a lot going on however ignoring the GCA to get you off Pred quickly would be irresponsible. I have GCA and am on TCZ. I was on Pred for 7+ years and was able to reduce quicker and come off Pred when I started the TCZ. Let us know how you get on.
You can get it in Australia. I am in Australia and have injections fortnightly. I needed a positive result from biopsy to get it cheaply, otherwise it is very expensive. I don't know if there are any other avenues for getting it cheaply.
I’m sorry that you’re suffering so much. I’m on methotrexate which has definitely helped me to reduce my steroids. Here in the uk a GP cannot prescribe it , my rheumatologist was the one who put me on it , so that’s another reason for you to see a rheumatologist, possibly . I had a liver function test before taking it to check that my liver was ok and I have regular blood tests to make sure my liver is coping with it . Good luck !
No wonder you are upset! I would be too. You poor thing. Maybe you could pay for a second opinion. You might find a rheumatologist that you have trust in, like Prof Dasgupta at Southend or Prof Mackie at Leeds. It’s worth a try.
I don't know a lot about the system in Australia but I do know that most people I have heard about have had to go to larger centres to get good treatment for GCA/PMR.
You were in the John Flynn private hospital originally, here in Italy or in the UK a private hospital wouldn't have a suitable specialist to deal with GCA. I think you probably need to see a specialist in a large Brisbane hospital
Yes, agree with all of the above (as always) it’s time for you to add Rheumatologist to the team.
Surprised your primary hasn’t suggested this.
I don’t want to ask too many questions other than, what does your cardiac specialist have to say about your chest pain ?
Are you on any beta blockers ? (they can also exacerbate chest pain, particularly metoprolol, a cheap drug that they seem to put everyone on in the beginning )
You just have so much on your plate.
Hang in there, I do hope you get some answers quickly, and it’s indeed a very good idea (if it’s allowed) to bring a caring friend with you on your doc visits.
We cannot do it here in the states yet, so we schedule tele-health appts when my husband is at home, or I have my husband listen in on speaker phone on my cell when he cannot be physically by my side.
Thanks everyone.Yes I am aware that Targin will not stop my temporal pain .I hope I can find a more supportive Dr and Cardiologist.I don't know if I will get the TCZ as my biopsy was negative.Im glad I have this group for support.
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