Posted , 17 users are following.
I feel like crap, I thought I had no energy before now I have less.. is the treatment worse than the problem? All pain is gone except head and eye. Just winded and tired... terrible headache dark circles under my eyes. I’m supposed to work Wed uggh.
0 likes, 20 replies
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lilian05079 linda04580
Posted
perhaps...could...whether
BettyE linda04580
Posted
Linda, I just had PMR but I do know how horrible some of the side effects can be. I kept a diary of mine and my GP made recommendations that helped me. At the lower doses they did lessen. I hope yours will, too.
Several people have queried your dose but please do take note of Eileen's posts. If you have GCA then 60 is the usual dose. I had a friend who was prescribed 60 for his GCA ( he didn't have PMR in all the time he was being treated. ) Sadly he's no longer around to ask so don't know about side effects. What I do know, though, is that he recovered, never had a recurrence and lived many years afterwards to lead a normal and interesting life.
Do hope you can get a sick note for your work and if you can then think of yourself, not your colleagues. They'll just have to manage!
christophe38948 linda04580
Posted
Hi,
Be patient. With the Pred not much is known but everything could "surprise" you.
Good Luck.
CW
Reeceregan linda04580
Posted
Hi Linda04580
I am 62 and I too have both PMR and GCA and was immediately started on 50mg pred, which I stayed on for 2 months before tapering. Just over 5 months now since diagnosis and now on 13 mg. I had the biopsy 6 weeks after commencing pred so it showed nothing, but the rheumy suspected that. It was a clinical diagnosis based on symptoms, thank goodness, otherwise I’d now be blind. You have all the symptoms I had, your headache sounds worse though so stay on the pred and rest as much as you can. You need to get the inflammation down and pushing yourself will make it worse. I learnt the hard way, and with the amazing help and support from the others on here, now do what’s called pacing, rather than burn and bust. The side effects of pred are no where near as bad as GCA and PMR, and you won’t stay on such high a dose longer than you have to. On saying that, your rheumy needs to make sure your GCA is controlled before he reduces your dose. If 60 mg isn’t enough don’t be surprised if he increases it to get rid of that headache and eye pain. Good luck, I’ve felt your pain...literally. You will improve, I have gone from being almost in a wheelchair to travelling around again in our RV, picking up my grandchildren, doing my yoga and dancing, All in moderation compared to pre-illness but getting better every day. 💪
Anhaga linda04580
Posted
I agree with the others who say you really should try to be off work for a while if you possibly can. If you had broken a leg, or were laid up with the flu or pneumonia there would be much more understanding of the need for recovery time. This is why PMR and GCA are included in that category called "invisible diseases". You may look better than ever on your medication, but as Eileen says you have a serious systemic disease and your body absolutely requires enough rest in order to recover. If you must keep working, if you don't have sick benefits for example, then something else will have to go. Can you enlist help with some of the other things which come with running a household, at least for the next few weeks until things settle down and you adjust?