wymberley Posted May 20, 2019 Report Share Posted May 20, 2019 " Arthritis is all good fun The hospital was screaming at me to stop one particular drug. Ever seen a mobile Belisha Beacon? Not a pretty sight. Out of nowhere I looked like someone had got a spray gun and covered me from neck to ankles in dayglo red which fortunately disappeared within 48 hours of stopping the particular drug" The above is extracted from "Soft 20" in the cartridges sub-forum. The fun has now stopped. Had to go back on the steroids, phasing them out as the replacement drug dose was increased and I got to the full dose only to find I can't breathe, so now my GP has taken me off these as well. Had a blood test on Thursday and called back to the Doc' on Friday. Saturday was spent in the RD&E Hospital, Wonford. The blood test couldn't completely rule out pulmonary thrombosis, but after some 11 hours of checks, I'm in the clear and after a few days without the drug the breathing has eased a tad. Trouble is, I can sense that the arthritis is making a come-back. My next specialist appointment is on the 31st and there's just one final option to try. Therein lies the rub. This one means that for all intents and purposes alcohol is a no-no. For my 75th on the previous Saturday No 1 son gave me a bottle of 52 year old vintage port. What with the existing Rioja stocks, I reckon I'll just have time to finish the port off by the 30th. Going to give it my best shot. Quote Link to comment Share on other sites More sharing options...
strimmer_13 Posted May 20, 2019 Report Share Posted May 20, 2019 Have you tried cannabis oil? It might help. Quote Link to comment Share on other sites More sharing options...
grrclark Posted May 20, 2019 Report Share Posted May 20, 2019 RA is a stinker. Have you been tried on the various biological drugs? Some of those are amazing, but with potential side effects to match sadly Quote Link to comment Share on other sites More sharing options...
Saltings Posted May 21, 2019 Report Share Posted May 21, 2019 (edited) my sons girlfriend 24 year old suffers and has been put on metetraxate for about four years now and is coping ok no guarantees no babies (as deformed) other choices available for and if she wants children works for some but not others a friends daughter had a lot of problems on the same drug, caused loads of problems now on another drug program all the best pain relief is not easy somewhere the right specialist can help Edited May 21, 2019 by Saltings Quote Link to comment Share on other sites More sharing options...
wymberley Posted May 21, 2019 Author Report Share Posted May 21, 2019 7 hours ago, Saltings said: my sons girlfriend 24 year old suffers and has been put on metetraxate for about four years now and is coping ok no guarantees no babies (as deformed) other choices available for and if she wants children works for some but not others a friends daughter had a lot of problems on the same drug, caused loads of problems now on another drug program all the best pain relief is not easy somewhere the right specialist can help Yep, this is the third one that I could be heading for. Before I started any treatment, I had various tests, one of which was lung performance. All OK. But in view of Saturday's checks which showed I was clear of the embolisom, there was a minor problem found. As the lung performance check is related to this drug, we'll have to see. Silly thing is, I was going to be put on this one following the first disaster, but because it means virtually no alcohol - I'm way, way below the recommended limit, but do like an occasional tipple with, or after, a meal - I asked to go on the one that has really messed with me. I'm very sorry to hear about the young lass. Just like my shooting oppo's wife shortly after they married, that age is far too young to be plagued with this iaffliction. Quote Link to comment Share on other sites More sharing options...
grrclark Posted May 21, 2019 Report Share Posted May 21, 2019 Wymberley, i have been on both tablet and injectable methotrexate for the last 8 years and i’m still enjoying wine, gin, beer and whisky....plus a whole lot more. You will get 2 weekly blood tests for a while to check liver function, if nothing u toward shows up then you can carry on exactly as you are. I would suggest if you don’t drink a lot then don’t change anything unless blood tests say otherwise. Lung function is important, Methotrexate lung is a serious complication, but they are very much aware and you will get annual or bi-annual chest x-rays too. Quote Link to comment Share on other sites More sharing options...
wymberley Posted May 21, 2019 Author Report Share Posted May 21, 2019 1 hour ago, grrclark said: Wymberley, i have been on both tablet and injectable methotrexate for the last 8 years and i’m still enjoying wine, gin, beer and whisky....plus a whole lot more. You will get 2 weekly blood tests for a while to check liver function, if nothing u toward shows up then you can carry on exactly as you are. I would suggest if you don’t drink a lot then don’t change anything unless blood tests say otherwise. Lung function is important, Methotrexate lung is a serious complication, but they are very much aware and you will get annual or bi-annual chest x-rays too. Many thanks. Re the booze, I suspect that you're right as I've been reading conflicting reports. Not going to dive in, but listen to what the specialist says at the end of the month. At the moment being new to this it's all up for grabs. The Hydroxychloroquine is out due to the rash - some rash! I thought I was doing good with the Sulfasalazine until I couldn't breathe too well to put it mildly. However, I was on 2000mg daily and following my GP's instructions halved this then halved it again before stopping it completely. What I don't know is whether or not the 25% dose would have been sufficient because as it takes a while to get into your system and work, it might also take a while to come out. Currently, taking nothing but it's only been a few days, unless I try to do too much with my hands I'm OK. All a bit confusing at the moment, but hopefully we'll get some sense out ofit at the month's end. Quote Link to comment Share on other sites More sharing options...
grrclark Posted May 21, 2019 Report Share Posted May 21, 2019 (edited) It is the approach of my local trust that they start on a combination therapy of methotrexate, hydroxychloroquine and sulfasalazine together. If i recall it was 20mg meth, 100mg hydroxy and 2000mg sulf i started with. It worked for 3 years, almost to the point we thought we could stop everything then RA came back strongly. When they moved me onto injectable meth they stopped the other two. There was another DMARD they tried me on too, Leflunomide Now i have to inject enteracept and methotrexate every week. Feel like a pincushion, but worth it to not be crippled. So there are still plenty options for you if the Methotrexate doesn’t work and don’t let them tell you otherwise. Edit to add: It was the opinion of the two rheumatic consultants that I know, one through shooting, that the two drugs you have been on are the least effective, but also the cheapest and less likely to have major side effects. Edited May 21, 2019 by grrclark Quote Link to comment Share on other sites More sharing options...
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