Just returned from seeing Rheumy! Oh dear...
Posted , 12 users are following.
Have just had my much awaited for appointment...well, we did not agree at all...Feeling ill, with blurred vision and very drained, practically house bound to cut a long story short...I had in the meantime split mt my dose since last week. She told me I MUST get off these steroids, because three years is far too long, I went up to 15mg xmas gone, because of the blurred vision, she now says I must come down 1mg per month, so I suggested when I get to 10mg, that I do it slower....no way, (but I am!) she says the report which I quoted was rubbish, about less relapses....I have had a blood test, and I`m to have another if I get a flare, but whatever happens, I must come off them. Because of having Fibromyalgia as well (20years) and not being able to tolerate any bisphohonates (?) bone thickeners as I call them, I`m to have a yearly injection, I would welcome any comments from anyone who has had this....All I can say is she would not budge from what she believed, and certainly wouldn`t listen to me. She ended by saying dosn`t worry, you`ll be off these awful steroids soon!....( I hope so one day, my way, it will be......SLOWLY)
2 likes, 29 replies
mrsmop linda17563
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I really dislike doctors who don't listen. It wastes your time and wastes their time and alienates you, the patient.
Can you see anyone else?
pat38625 linda17563
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Rheumy said he would see me in 8 weeks time. I will deal with that situation as and when it arises. I will be doing it MY WAY not anyone elses. Good luck on your journey. All the best. Pat
audrey25251 linda17563
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tina-uk_cwall linda17563
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i'm afraid you may have to be as stubborn as she is. I don't know if you have PMR or GCA or both but if you only have PMR you do not have to be under a rheumatologist and so if you trust your GP you could request that they handle your recovery plan.
don't forget there's lots of lies that you can say in order to prolong your period on each dose, there's colds, coughs, sore throats, upset tummies, bereavement, stress from events. I'm sorry but I would have no qualms about lying in order to get my own way. Deceitful? Not in my book, drs are not gods and after all she is treating you how she wants to treat you and not how you want to be treated. She is not even willing to compromise so stuff her, drs need to work with their patients not dictate or enforce a certain treatment plan when in fact there are recognised treatment plans written by clinicians who have taken a special interest in this condition. Personally I think her attitude is disrespectful to both you and the clinicians who made the effort to study this illness with more commitment than she is. Stay firm. All the best, christina
Oregonjohn-UK linda17563
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Best of luck, looks like you need it!
MrsO-UK_Surrey linda17563
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I believe the yearly injection is still a bisphosphonate - has she given you the name? Meanwhile, I assume you are taking a calcium supplement, and have had a Vit D blood test to check for any possible deficiency. Also, have your iron levels been checked for any signs of anaemia which could lead to you feeling so "drained".
If you have no symptoms of GCA, then the blurred vision is probably being caused by the steroids.
Do try and get referred for a second opinion.
audrey25251 linda17563
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One good thing about my practice however is that none of the doctors has tried to get me to make a rapid reduction of steroids. (I am currently on 25pd and find it difficult to reduce - I have both PMR and GCA). They seem happy enough to let me choose how I manage the illnesses. Of couse (being cynical) they may well think she's almost 80 and not much longer for this world anyway so it doesn't much matter what she does!. I am not being critical of such an approach; it means they trust me not to do anything stupid and allows me to work out a plan that suits me without having a doctor hovering over me and nagging me! I do sympathise greatly with you in having to fight your medical consultants. PMR and GCA are horrendous enough without having to fight them.
Susanne_M_UK linda17563
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I have my appointment on Thursday and I know he is very keen to get me to a much lower dose asap and has mentioned probably starting methotrexate as well. I've been on 40mg Pred since Friday due to flare up and its only today I've felt able to move off the sofa for brief periods.
linda17563 Susanne_M_UK
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Good luck on Thursday...keep me posted....Thanks for your reply..
Susanne_M_UK linda17563
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I asked him afterwards about his opinion of my rheumy wanting to try me on methotrexate. He was totally for it and said he supported that and that it was absolutely the right decision in my case, having been on Preds fir over 5 years.
I know we are all different and each situation is different, but I'm relieved to hear his view, as an authority I trust. I'm sorry your sister has suffered because of methotrexate.
I am now willing to give it a go and hope I don't have to eat my words down the line!
Susanne_M_UK
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EileenH Susanne_M_UK
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However - I would say try it - but do not accept feeling worse rather than better just to be taking MTX if it isn't working to reduce the pred. That just puts 2 lots of side effects onto the list.
linda17563 Susanne_M_UK
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Go for it I would with mxt....in my case the Fibromyalgia gives me lots of problems....I can just about take one Paracetamol for pain without side affects for the pain......Good luck.....
Susanne_M_UK EileenH
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Susanne_M_UK linda17563
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MrsO-UK_Surrey Susanne_M_UK
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The following post has appeared on the Healthunlocked forum this morning and I thought you'd find it very helpful:
"I began taking MTX for my GCA from the very beginning of my illness because high dose steroids caused mania. So I have never been on 'just steroids' for the last 18 months. About 3 months ago I finally felt vaguely normal and pain-free and had some ENERGY and was only on 8mgs pred. I hate my MTX (diarrhoea, blood tests, always having to stop and start, can't get my surgery to prescribe them, reduced skin immunity) so I thought I would try stopping it and see what happened. It takes about 6 weeks for MTX to begin or stop working. Over those 6 weeks I gradually got more and more shoulder pain and stiffness. This week, I was waking up in the night groaning in pain! I didn't increase the pred although I thought I might if I needed to. So, here we are, 8 weeks into the experiment and I started back on MTX yesterday.
What did I learn? Well, it works! Whether as a steroid sparer or as a disease suppressant - it is definitely doing something. I also learnt that I can't bear to increase my pred. Months and months of dropping the dose and still looking like an over-inflated hamster - I just couldn't bear to put myself up to 10. And I still have active disease after all this time (4 years and counting now). Boo [] One of my hopes was that I might get some feeling back in my hands - they went all fuzzy overnight about 6 months ago and I work as a pianist. They are just the same. It makes me so sad. Another loss to grieve. I'll never know if it is the drugs or the disease causing a peripheral neuropathy.
So I suppose I had 2 months off MTX and avoided 2 blood tests and may six trips to the doctors and pharmacists to try to get my drugs. Now back at square one. But sometimes you have to just suck it and see. I am going to accept 8mgs pred and MTX for another few months and then I might just run the experiment again!"
It was lovely to see you again yesterday in spite of how poorly you are feeling - shame you were on a fasting day with all that lovely food around though! Hope hubby enjoyed his share of it anyway!
Susanne_M_UK MrsO-UK_Surrey
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I found Prof Dasgupta' s talk very interesting and informative. I'm glad I made the effort to come. Yes, hubby enjoyed the lovely spread! I had to wait until 6pm!
I'll do a separate post on today's rheumy visit.