So apologies if you are having a good day and don't want to be all doom and gloom but I'm getting to the end of my tether. Please forgive me for the epic post again but I need advice...
I had my follow up rheumatology appointment today after my last one was cancelled to find out the results of all the tests and scans etc I'd had and to see how I was getting on. In short all my results were pretty 'normal' (even though they forgot to do my ESR (12) before I was upped to 20mg) which is good news. However, despite my prior diagnosis of PMR with GCA overlap, the consultant who I was supposed to see (and was confident in) had overrun and so I saw someone else. I had to go over all the history from the start and he was pressing me about stress and whether I'd had any particularly stressful episodes before it all started. So I explained that my then 11 year old had been knocked down by a car and it was weeks in hospital followed by a year of rehab and running about after him whilst he healed so yes, pretty stressful. 'So are you a stressy person generally? Um no but I think that was an exception!! He then proceeded to check my pressure points, told me it wasn't fibromyalgia (yes knew that thanks), wasn't RA, wasn't Lupus and he also didn't think it was PMR.
I told him that my current dose of 20mg wasn't cutting the mustard and that I was still getting pain in my hips, shoulders, jaw and tongue and was hoping to up it to 25mg to see if that would help. As he doesn't think it's PMR even though all my symptoms fit, one because I'm 45 and it's almost unheard of AND I don't have raised inflammatory markers. I asked him if he'd ever seen people that present like this and he said no and it's only about 2 or 3 percent that do. So I asked him couldn't I be in that percentage? Maybe, but he wants me to reduce my Pred down by 2.5mg a month until I get below 10 and preferably 4mg at least and then readdress. He was emphatic about this and wanted me off the steroids as soon as possible because they are 'really not very good for me and can give horrible side effects'. (I showed him the cabbage patch kid picture of me and said I was well aware of this!)
So this is how the ensuing conversation went...I asked him what he would suggest I do in the meantime as I'm already stiff and in pain now on walking, doing menial stuff like shopping, washing up, I can't work, can barely manage to take the dog out, am constantly fatigued and still have jaw and tongue pain and even holding my phone or a cup of tea for longer than a minute makes my shoulders ache terribly. The answer...you just have to cope.
I then asked him about the fact if I'm like that now, how on earth am I going to 'cope' if you make me reduce Pred even more?? Again, you'll have to cope or come to the flare clinic but that's a 6 month wait. And then we'll redo your bloods and if we then think it's PMR we'll put you on methotrexate. And if my bloods are normal? We'll do the same!! So why can't we just do that now? Well because I don't think it's PMR!!!
So now what PMR peeps, my thinking is to ignore him, go up to 25mg, see how I get on with that and then do DSNS after a month or so. I'm just so fed up of almost getting somewhere and then it all being scrapped. Do I go back to Mr Hughes at Chertsey and see what he thinks now I'm on a lower dose, or find another consultant...or just keep doing what I'm planning to do which is just manage it all myself. I'm seriously fed up. What would you do?? I feel like everything I've researched and learned from here is completely contradicted by the 'experts' and have no confidence at all. Not a great way to spend my 19th anniversary lol poor husband spent the day with a blubbering, sweaty, puffy, and fuming wife!
Moan over, hit me with your genius.....if you are still awake!!
Tanya x x