Diagnosed with RA Jan 2010, after being continually ill, and repeatedly misdiagnosed for over a year. I had no option but to retire from work on medical grounds; as a Registered Nurse Practitioner, oft-times working alone, I was unable to get insurance, so my career, spanning 25 years, came to an abrupt end... Obviously, I was gutted, though not just about my career. Yet too, I was oddly relieved, finally to have an answer as to why I felt so ill, so much in pain, so exhausted...
Started on MTX, I found quite quickly that I was unable to tolerate tablets, so I inject myself each week. I now take 25mg. My blood tests have returned results consistently high, despite also having tried other additional treatments, such as sulphasalazine, and Humira, (with regular amounts of steroids 'thrown in' for good measure). Having always been fit/active; I am tired of the pains - I require consistently higher doses of Oxycontin and Oxynorm just to get through the day. I am tired of the immobility - at best I need sticks, at worst an electric power chair. I cannot use my hands - it hurts to wear splints, but it hurts not to, as well. I have recently started on the newest intravenous 'wonder drug' - RoActemera, but after 3 monthly treatments, I show little change and no visible improvement.
A recent Rheumy appointment found me very down... the Consultant had to admit, I am continuing to puzzle him at the moment... all he could be definite about, was that I had the worst possible form of the disease - severe, continually active, and aggressive, RA. I am 46 years of age, but feel 90. I have to rely upon my 2 teenage sons for many things, just to get through the day.
Where do I go from here...? Life is becoming one tedious chore, and I cannot even manage that without assistance to some degree...
I am usually so positive... but where DO, I go from here...?
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janjo
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I am now on 4th Rheumatologist and am hoping she will be able to help. I went from regular gym and gardening etc to almost total immobility. What has saved my life time and time again has been a herbal pill which I get on line. It is the only thing that touches pain. Had been off it for over two weeks as had massive steroid injection (felt like a new person) then one leg quit next day other started. That night I spent over 2 hours screaming with pain unable to move and get chainsaw to cut off offending joints. Saw herbal pills by bed took two, two hours later fell asleep and woke up to manageable pain and was able to hobble about. Beline Capsules are only available online and am not sure if you can get them in uk (awaiting approval on one ingredient I think). Whatever is in them and it all listed as natural can be no worse than living on painkillers etc. Am still hoping regular drugs will dampen disease. Have tried all raw food, alkaline diet, homeopathy, accupuncture etc. Wish you well
Perhaps if you could track down the raw ingredients of this herbal capsule you might find the answer to what helps too. Someone else talked about the Beline capsules here recently - not sure if it was you or not?
Janjo I don't really have anything to say apart from I really do hope there's something out there for you that can help you soon - your situation sounds really hard and makes me realise how lucky I am. Thanks for reminding me not to take this period good health for granted. Tilda x
I thought your post was very restrained given what you have to put up with & you know, if you want to 'vent' more flamboyantly sometimes don't hold back - 'cos I think that's quite good for what ails you in itself! Plus lots of us will continue to respond with encouragement & empathy. I think it is positive that your Rheumy admits he's stumped rather than fobbing you off as that should, I hope, mean that he's going to pull out all the stops to help you.
I do not have constant pain so things are easier for me but my RA has shown that it has teeth & then some, doing a lot of damage quite quickly at times. I don't think my Rheumy is too sure where it's all going either & I do have a sense of unease about the future. I think of myself as being very well in many ways but today I went on a walk that I've done many, many times before & found it very difficult. I know the path so well that at every point I found myself comparing how laborious it all was to previous walks & that is hard to cope with. Usually I walk on my own but my husband came with me today & it was all too obvious that walking together regularly would be very tedious for him, though he'd never say that. I guess we all have to live in the present as much as we can, living life as fully as we can.
I think that teenagers rarely show their appreciation of parents but at least they don't need help with physical things & your sons will surely appreciate your obvious intelligence & stoicism - things like that can make all the difference to how well they cope with the world. Helping Mum is not such a dreadful thing at all though it's clear from your post that you wish it was different, of course you do.
Also I've been diagnosed 2 years now - like you I am relieved that there was a rational explanation for my terrible weariness & inconsistency, I think I've had this disease lurking in the background for many years & blamed myself for struggling so. I do some work but bring in very little money these days. But although it seems like a lifetime I gather that 2 or 3 years is not necessarily a long time in terms of getting the treatment right. Something might well click for you yet. I do hope so.
Hi, I am sorry to hear of so much pain and immobility. This desease is awful and many of us on this site suffer as you do. We just cling to the hope that one day we will find the drug that takes the pain away and allows us to live a normal life - and new drugs at being developed all the time so there is always hope. In the meantime try not to get too stressed, take regular rest during the day and don't try to do too much -you can't do what you used to so stop trying it'll wear you out. One thing -has your Rheumy agreed the over the counter tablets? Sometimes these can interact with prescription drugs and actually prevent them from working and in some cases actually be toxic, so I is always best to check.
A friend's son is a research chemist and he analysed Beline, yes they contain some powerful ingredients but from a natural source. He was checking them out for his gran.
I've found that nearly all natural supplements get bad press from major drug cos.
At this point with my ra I am happy to take anything as long as it works
A wise thing to do. Some of the 'natural' remedies are really dangerous. I hope all who consider taking alternatives will check with their rheumatology team first.
Please don't take this the wrong way but natural does not equal harmless.
There is no magic in natural sources - lots of drugs in regular use are derived from natural sources - think of digitalis, used for heart failure, obtained from foxgloves, but needing very careful dose control to avoid harm, or aspirin from tree bark, again harmful in large doses, opium from poppies from which many painkillers are derived and all have the potential for addiction, vincristine from periwinkles used as chemotherapy for cancer and many more.
All the drugs present in Beline are known regular medications prescribed for other uses. Or in one case, an anti-inflammatory non-steroidal drug no longer used in this country.One is a steroid and needs careful control.Taking Beline relieves your symptoms because it contains powerful drugs.
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Hi everyone,New Blogger! Where do I start??
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Do you have flushes with RA
Scared
Where to go from here.
