tapering

[Mumdadlove]

Good afternoon all

I have been on alternate days of 17 1/2 pref one day 15mg the next since Monday, today I have felt really strange, heavy head not temple, tired, just a bit off, I may be overthinking but could it be down to this weeks pattern of the steroids, I have to do this for another week then down to 15mg, my rheumatologist wants me down quickly, I think she’s now more worried about the side effects than the GCA, I know from this great group that this seems is quite a regular thing, I started on 30mg in Dec 23, thank you for all of the help and advice that you give!

[DorsetLady PMRGCAuk volunteer]

Not a fan of alternate day style of tapering -think it confuses the body but that’s just personal opinion…

Could be steroid withdrawal -and if it is. then it should wear off within next few days -but it your weather is anything like ours, some could be down to that as well.

What side effects are Rheumy concerned about?

And to be honest 30mg is a low starting dose for GCA, so just be sure it’s not the start of a flare….,

[Mumdadlove in reply to DorsetLady]

I actually feel confused today, just not right and last night horrendous sweats, I’m on Hrt and not had those for a long time, I’m away on holiday tomorrow for 3 weeks so will see how I feel, my main side effects are really hairy(face terrible) I lost a stone at the beginning but put that on over a two week holiday and now I’m just starving all the time, steroids have pushed my eye pressures up very high(have had stents put in left eye 6 weeks ago) has brought pressure down, right eye to follow in August, have osteo penea, just taking calcium and vit D androlic acid upset my stomach too much

She started me on 30mg, I was due to have scan within a few days, she messed up the referral and I finally had it 10 days later, the radiographer told me that it was unlikely it would show up due to 10 days of pred, it was negative, due to this and me getting down from 30mg to 20mg she now seems to want me down quickly, she said weight gain and possible diabetis, I see her privately costing me £200 a time usually once a month but I am going to book to see Rodney Hughes to get a second opinion, she also said about introducing another drug to help lower the pred,

I had temple headache about 6 weeks ago was on 15mg and due to her scaring the life out of me in the beginning about the seriousness of it all I upped the pred to the next dose, when I told her this she completely contradicted herself and now just seems bothered about getting me off them

Sorry I’ve gone completely off piste with all of this but I am wondering if like you say the body is a bit confused as different dosing per day, thank you so much for replying

[DorsetLady PMRGCAuk volunteer in reply to Mumdadlove]

oh dear -what a complete shambles -no wonder you are confused.

PMRpro has responded re weight etc

Hopefully Rod Hughes will get you back on track -but you may have to increase your Pred temporarily to get things back on track….

[Mumdadlove in reply to DorsetLady]

Thank you, I think a second opinion won’t hurt and he seems to know his stuff, will have my holiday, relax and sort it out when home, thank you again for all of the advice

[piglette]

I think she’s now more worried about the side effects than the GCA, I think if that is true, she should think twice about being a rheumatologist. Why, why, why do some doctors keep saying to their patients “I want you down quickly? “ They should be looking more holistically, and think about the pain they may be putting their patients through.

[Mumdadlove in reply to piglette]

I agree, I have felt very confused about all of this, I am going to get a second opinion to make sure I’m on the right path, thank you for replying

[Pr0jection in reply to piglette]

Agree Piglette, as in why why why. My rheumatologist told me about 4 months ago to drop from 7.5mg to 5mg without tapering. He said I no longer have PMR according to the consistently good results of the blood tests. I decided to manage my own tapering and I got down to 6.25mg (we can only get 5mg tablets in Cyprus). At my last appointment just over a week ago when my blood tests results were again excellent (his words) he told me I should stay on 7.5mg because there are no side effects at this dose, and he didn't want me to have a flare. I didn't have the stamina to remind him of his previous statement.......

[piglette in reply to Pr0jection]

You have answered one of my ‘whys’, it seems doctors are not properly trained on the affects of drugs on their patients and how to use the drugs to ensure they work effectively. If I were a doctor I would be ashamed if it were known how lacking my basic training was in pharmaceuticals.

[PMRpro Ambassador]

I know the weight gain, the hairy face and "stuff" is hard - but there is no side effect of pred that is as bad as the ultimate adverse effect of GCA which total irreversible loss of sight. If they are going diagnose PMR or GCA in the UK, then they must also be prepared to work with the patient to use the only real option for management which is prednisolone. They have to use enough and for long enough - not try to manage on too low a dose which does nothing effective and get the patient of asap which will result in a relapse/flare, whatever word they want to use.

There are ways of mitigating the side effects - cutting carbs drastically often avoids weight gain and also helps damp down the inflammation. I used my epilator on my face - works brilliantly once you get used to the ouchy bit at first.

[Mumdadlove in reply to PMRpro]

I know you are right and I had come to terms with all of this, but now she has just confused and annoyed me, just totally contradicted herself, I will get on top of the weight thing, the hair I’ve just defuzzed today with cream, my eyes hopefully under control, my husband diabetic so I test and at the moment ok, my sight is the most important, I think that’s why it’s thrown me with the reducing, I thought I’d done the right thing by upping slightly with the temple pain, thank you so much for your advice just feeling a little bit lost at the moment and know you’ve all been there

[PMRpro Ambassador in reply to Mumdadlove]

Anyone else would have said you were right - she is obviously very insecure and takes it out on her patients. It will come right - especially if you can get to Rod Hughes.

[Mumdadlove in reply to PMRpro]

Thank you, I don’t think she’s the right person for me, luckily Rod Hughes is not too far from me, will keep you posted, this site is so helpful!