Hi All, several months back I told everyone that I was changing Rheumies because of his shocking attitude and behavior I would try and get another one well easier said than done still not heard back from the hospitals I tried, Fran reckons we should keep our 4th Dec appointment with him and use it to our advantage, We go in armed with a list of what we know and what we want, or how we get it, and who do we see to get it no excuses, even if it means meeting his senior consultants, Fran reckons taking notes will ruffle him and has agreed for me to take the lead till I get annoyed with him which I will then she will take over, We will be seeking help from yourselves about the drugs that is out there and being used on others with the same illnesses as myself I cannot accept that there is no medication for RA sufferers who have IPF as well, If they can control our RA we have a life left, (Looking forward to the meeting now I bet you all want to be a fly on the wall) Matt/Fran
Fran, Armed and Dangerous, Mattcass - British Lung Foun...
I don't know why RA can't be treated if you have IPF, is it that RA treatment may cause complications with IPF I wonder. I expect the BLF helpline could shed some light on this for you.
Wishing you good luck with the consultant and hope you get some good results working together
You may already be aware of RA treatments but perhaps you could investigate why any of them may cause a problem to IPF. NHS choices link below:
Best wishes BC
PS on the link above, scroll down to where it says biological treatments for RA, it starts off saying:
"Biological treatments are a newer form of treatment for rheumatoid arthritis."
read more from the above link.
Hi BC, Hope you are well, From day one after the RA attacked my Lungs my Chest Doc said that any RA meds would not be available to me as the meds themselves would and could be fatal, it was only after a consultation with the top chest doc in Scotland that I was allowed to try hydroxy as was the mildest treatment for RA and they hoped it would cut down the inflammation sadly this did not work so the RA is getting to do as it wants, Hips this week ankles next week who know's. Matt
Hi Matt, I am having some difficulty at the moment, don't know what the problem is, having muscles, bone, joints , discomfort, heat and pain this also seems to change location, but mainly legs and feet affected. Blood results indicate a problem, seeing doc again next week.
Sorry you are having such difficulty getting this treated Matt. I wonder if the new biological treatments they speak of on the NHS choices site may be of help to you. I do hope so.
I'll be keeping fingers crossed for you.
As you know I have the same as you and am lucky enough to have had 2 really good rheumy cons. Only changed my rheumy as he is based at the same hospital as my respiratory cons. We have been looking at this from a joined up thinking cross specialist situation, so much so that I see a consultant every 3 months, rheumy then resp etc. They then consult so know what has been going on. Both then write letters to GP and me. Yes I am a lucky bunny.
Medication I have been or am on since onset of PF
1. Cyclophosphamide - chemotherapy immuno suppressant - intravenous 1 every 4/6 weeks for 6 doses. This is used for PF and also is good for RA.
2. Azathioprine - pills 200mg daily, was a slow build up to the 200mg. Another immuno suppressant good for PF and RA. This has allowed me to go from 35 to 15mg prednisolone.
3. This is one to be considered for the future - Rituximab - chemo again therefore another immuno suppressant so again good for both. See rheumy in 2 weeks to see if we keep the status quo or play.
My heartfelt wish is that you become free of pain soon as it is more debilitating and mood changing than the sob.
love to you and Fran xxxx
Hi Mattcass. I too have RA and PF. My 2 Consultants work together. I need Prednisolone for both illnesses. After trying many drugs for RA I am now on TOCILIZUMAB taken as an Infusion every 4 weeks. It is a Biological drug the Hospital had to get permission to give me as it is so expensive. I go to the Ambulatory Care ward at our Hospital an am there for about 2 hours or so. I was also on Methotrexate as well and the 2 of them worked great, however the Methotrexate made my lungs worse and I had to be taken off them. I take prednisolone any thing between 15 and 40 mgs depending on inflammation in RA. I have a lot of problems with them, thinning skin, lots of cuts and bruises all the time, sores not healing up and now I have Brittle bones. However they seem to work great for me so its great to have less pain, what am I supposed to do? Hope you get on well at your appointment and look forward to hearing your outcome. Cheryl
Hi Cheryl, Than You, All my rheumy concerns are to get my steroids down to 5mgs, god knows i have explained to him several times i have got to 15mgs and the pain is beyond belief, my GP and my Chest Doc tell me to up them a bit to 20mgs and i am fine well better than 15mgs. I know I'm 2st overweight but i can concentrate on that when I get a happy medium.Matt
Hi Matt, sorry for late reply but we were away to a Cabaret Weekend at Blackpool. We had to cancel our Holiday we booked a couple of months ago because I was too sore to go. My Rheumy Consultant put me up from 15mg - 30mgs for while I was away this weekend to help me. The travelling down knackered me up on Friday, so Saturday I sent Hubby out on his own while I lay propped up on the bed. We went down for Dinner and Cabaret on the Saturday night, but I could only sit for a couple of hours. Sunday we went into Clevelys for a while on the tram. I had lots of rests but when I got back I was exhausted and my hands were so sore with using my crutches. Had a good rest that night and home Monday. Yesterday morning I could not get out of bed, couldn't hold a cup and couldn't even get myself off the loo. I was in an awfy state. Swollen all over. Took my pills at 6am then more at 11am but it was teatime before it got easier. Phoned the Rheumy helpline and they told me to go up today to joint injection clinic. She injected my Shoulders and right knee with Steroids and said she hoped that it would cure the small joints too. BUT, I had to cut steroids to 20mgs, then 15mgs at end of week. Then back down to my usual 15mgs. Then she wants me down again. It is hard at 15mgs that's when I flair up again. I now have Osteoporosis with the steroids and lots of other problems. Without them my Lungs and Rheumy are worse. Sorry for the long tale. Take care. Cheryl
I went to see a Rheumatologist because I would bruise they were purple in colour and I would feel flu like, The first one I saw was a locum he was really good when I went back for my results I saw the regular rheumatologist he did not know why I had these purple marks then he asked if I took steroids I said yes he told me that was the reason and discharged me what he didn't ask was how often I have only had 3 lots of steroids in the last 5 years because I was very lucky not to get the flu so he was way off the beaten track with his theory.