I've been to visit my drug lord.... the rhuematologist ! lol
Posted , 11 users are following.
Hey everyone!
I went to my rhuematologist on Monday for my 3 monthly appointment. I've been feeling a bit poorly (more than usual that is!) so it was a timely visit. It turns out my CRP is at it's highest level ever, so I feel somewhat justified in feeling like crap!
As background: I'm currently on 5mg Pred, 20mg MTX (followed by folic acid), Lryica, antidepressants and BP medication. I've also been taking a fair bit of Panadine Extra (codiene 15mg and paracetomol 500mg). It is believed I have myofacial pain syndrome, and possibly fybromyalgia as well as PMR).
The rhuemy is concerned I'm not responding to pred like I should be - other than the first week or two on pred I've never felt 'well' - and the MTX has worked as well as it can on me - I've dropped to 5mg from 20mg last Xmas!) so he's keen to try a new drug regime on me.
He seems to think that Tocilzumab, usually only used to treat RA, might help PMR, however, it is a regulated drug here in Australia, worth roughly $10k a year, so unless I'm diagnosed as having RA I can't get it. I also have to have tried the standard treatment for RA (Plaquenil) for at least 3 months. So as of yesterday I've increased my pred to 7 1/2mg and started on Plaquenil.
Day two and I feel dreadful. I'm teary, disorientated and have a funny tummy (that's putting it mildly!). I'm not allowed in direct sunlight, and have to wear sunglasses when I go outside, as the Plaquenil can damage the eyes. I wonder what else these drugs actually do to us?
I really don't expect the Plaquenil to actually make me feel better so I wonder why the hell I have to take it???
1 like, 18 replies
kathy67492 FlipDover_Aust
Posted
your whole experience sounds too fast in my opinion. I am on 7-1/2m prednisone and cannot get to 7 without feeling awful...so how did you drop so quickly?!....and add those other medications. Depression is easy to come by when you feel so badly with no sign of relief. Something is not right. I think if you started on 20m for only two weeks and then started a fast taper, you would never feel well. Hope you can find a solution that works for you😊
FlipDover_Aust kathy67492
Posted
MTX is what's known as a 'steroid sparer'... if you have real trouble dropping pred dosages you can use it to help lower the dose. I'd already been on pred for a year before starting MTX. That was six months ago.
jeanne333 FlipDover_Aust
Posted
I hope you got my reply to your post a little while ago. I had 2 months of Hell, and I'm still having problems, cuz of Plaquenil.
FlipDover_Aust jeanne333
Posted
I'll go and take a look. Thanks.
FlipDover_Aust jeanne333
Posted
Bloody hell. That's awful. I really hope I don't get any of the side effects. No wonder you are feeling done over.
nick67069 FlipDover_Aust
Posted
FlipDover_Aust nick67069
Posted
MTX is to help you reduce the amount of pred you need by making it more effective. It worked for me. I don't believe my current problems are due to the reduction being too fast.
Brief history:
Dec 14: diagnosis - 50mg pred followed by gradual decrease to 11 mg
July 15: major flare - back up to 15mg, then 20mg, feeling awful
Nov 15: unabel to reduce below 20mg, feeling awful
Dec15: put on MTX 20mg
Dec 15-June 16: Redcution from 20mg to 5mg, feeling much better!
July 16; major flare, up to 7.5mg pred, put on plaquenil, feeling awful
constance.de FlipDover_Aust
Posted
Flip, I think most of your troubles come from the lack of pred. You reduced FAR too quickly.
I am on 5 mg after FIVE years!! I sarted on 30 mg, within 3 weeks I was on 40 (dr said "to zap it" - it didn't!), ESR and CPR still kept rising (even on 40mg). After several months my ESR was 132, CPR 100+. I collapsed and was hospitalised for two weeks. In hospital they got it down to 30 again and it has taken me all this time to get down to 5mg. I know I am atypical, but the doctors in Australia and America don't seem to have a clue. The British Medical Journal says PMR takes between 2 and 5 years (even longer at times).
Rheumatolgist tried to put me on MTX and then on Planquenil - I was allergic to both, very sick, dizzy, etc. etc. Hospital (second one 1 year later - also for two weeks) stopped it.
Of course there are many on here that have no trouble with it, but you are on quite a few different medicines so take care.
Do hope someone with a less drastic past of PMR can help you.
Kindest regards from Constance. Try to keep smiling!
FlipDover_Aust constance.de
Posted
MTX is the reason for the rapid decrease in pred - and I stopped at 5mg as I could tell I just wasn't going to cope with any less, regardless of the rheumy's instruction to get to zero (I simply laughed at him - literally!)
Silver49 FlipDover_Aust
Posted
You are having a very difficult time. I realise how fortunate I am compared to a lot of people on this forum. I wonder if it's because I'm retired and can pace myself. We had our grandchildren staying last week and it took its toll which made me think this would be how I would feel if I was working. Perhaps this is partly why some people are struggling. I realise some people have other conditions to contend with as well as have I. It is such a bewildering condition and I think that in many ways the medical profession are, to an extent, still in the dark. Grandchildren are back next week for a week and then we have a 2 day break and they are back for 5 days. It will be interesting to see how I am at the end of that period!??
FlipDover_Aust Silver49
Posted
Funny you should mention this - I work full time and live a fairly 'busy' life, with kids and grandkids and a lot of hobbies (as you'd expect for a 'young' woman of 52!)
I have noticed a pattern however, 3 months full time work - flare - off work for a month or two.... this is the fourth time this has happened in 18 months... I think I need to sit Mr Flip down and have a serious chat about our finances and incomes.
Silver49 FlipDover_Aust
Posted
That sounds like a good idea. My husband was going to work on beyond 60. When I asked him the reason he said to make more money for retirement. I didn't see any reason as I thought we would adapt. As it turned out he did retire and was diagnosed with a serious and progressive illness. He has had major heart surgery from which he almost died. The progressive illness has plateaued and one area has improved. It will progress but I still firmly believe that if he hadn't stopped work he would be dead. I think removing the stress of work has helped his condition because we were given a very poor prognosis and that was 6 years ago. I think stress plays a major part in the effect it has on our bodies and the illnesses to which we succumb. Stress affects us all in different ways and we deal with it accordingly and one person's stress may be another's challenge. If you are able to adapt your lifestyle to suit a smaller income then it may make a big difference to your quality of life. Best wishes.
karenjaninaz FlipDover_Aust
Posted
i was on opiates for scoliosis surgery ~ 3 months and that has been my experience.
karen( retired anesthetist)
FlipDover_Aust karenjaninaz
Posted
Anhaga FlipDover_Aust
Posted
Karenjaninaz makes a really good point - you've just cut back a drug you're addicted to at the same time as starting another med with known serious side effects.
When you first mentioned it I assumed the Plaquenil trial was to provide justification for applying for Tocilzumab.
FlipDover_Aust Anhaga
Posted
Yes, she's right. I'll slow down my reduction of codeine. A few more weeks won't hurt me!
You assumed right, the Plaquenil is to provide justification for applying for Tocilzumab. So my questioin is, why not just 'pretend' I've taken it for the three months instead of making myself sick taking something that isn't going to work?