After Gina's last question (when did you realise there was something seriously wrong?), I started to wonder how it then progressed for you?
Compared to 5,10,15 or longer years that you have had it? how are you now from when you were first diagnosed?
I met a lady recently who has had RA for 30 years, she looked great, still manages stairs and much more than I expected.
I realise everyone is different but would love to know how it was.
Could you also tell me if anything close to remission was achieved?
This asking questions becomes addictive!!
Yesterday, I wasn't sure when I should stop sterilising baby bottles and had to stop myself posting the question here!!!
Thanks x
21 Replies
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think lyn-w or wonky warrior best able to answer this.. everyone different.. some people have a good quality of life others dont.. maybe is depends on the individual or the choice of treatment or how effective it is. a multitude of factors.. this quesstion can only be answered effectively by some one who had had the disease for five years or more.. actually mand.. you could help with this?
I did a blog on books/ knowledge and the reading material I found can help address fears/ concerns?.. Alison
I stopped sterilising when they started crawling and sticking all kinds of stuff in their mouths hee hee !!
Did you mean from our own individual experience or from the point of view of predictive factors in RA progression like Ali is talking about maybe ?
Fiona xxx
• in reply to
Hi Fiona,
Your own experiences is what I meant, yep, everything is going in her mouth now!
I assumed it was just really bad for everyone, sorry, I don't know how to explain....... I know it is bad for everyone, I don't mean to be flippant, I think I'm still coming to terms with it all (diagnosed this year) and I have read various case studies;.... but being on this site, reading the blogs ect and although I don't know you all personally part of me feels genuine concern and interest about how it is for you.
Gosh, I do waffle and don't get to the point easily!!! x
• in reply to
Hiya Wiliby ( Smile )
I know what you mean I feel just the same I want to connect with real people with RA whatever their age, stage sub type of Ra etc etc. Thats because its hard to get any yardsticks for what we are going through from just books. didnt think you were being at all flippant- Think it was a great question and interesting to hear all the answers Get to kow each other story so to speak. Does seem like most of us active on unlocked are of the more active disease type???
Baby's bottles easier I'm with Fiona once the baby turned into a rugrat crawling and putting everything in their mouths is the time to stop. careful hygiene would be my advise still keep everything as clean as you can but no need to steralise.
RA wise I seemed to go from having a sore throat in March 2008 late April 08 feeling like I was coming down with something first week of May, I couldn't function just a trip to the corner shop felt like a marathon I slept more than I was awake then the pain developed by the end of May I had been to the GP had my first consultation with Rheumy and the xrays next followed by starting MTX in June.
Hope that helps and never stop asking questions it's the way to find out.
I tell you a secret.... Amy is 6 months now, and well I took the steriliser out of the microwave, sat it on the cooker, forgot to turn gas off and now it's melted right through! so can't do it now anyhow!!
Wow, it all happend pretty quick for you, can I ask you how you are now?
Thanks Tricia x
think its safe not sterilise at 6 months.. but if concerned just rinse out bottle with water from freshly boiled kettle.
Some germs meant to be good for the immune system? but then RA is caused by our immune system being too good... !!!, my brother hasnt got ra. he used to crawl round eating rotting damsons etc... boys.. he has bad eczema which can be almost as debilitating as ra... his hands are often cracked open and bleeding.. we got some faulty genes.. the gene pool for my family is pants! heart disease, cancer and arthritis on mums side... dads genes better.. but consultant was interested in his psoraris in my diagnosis( until recently !!) . My consulant met my mum and her cursury visual assessmet was osteo.... there is a link well established between Ra and psorasis.. oh on my dads side down comes the eczema and asthma genes.. he has a consultant appoint tue.. possible has some form of renal type tumour?
• in reply to
Oh no Alison if you need to talk about your dads app we are here
xx
getting back to question in hand PLEASE can a Long Term RA sufferer advise??
we all have got caught up in babies bottles.. but these blogs are so great for sharing info, stories, life experiences,, poems whatever, does matter we all enjoy it and gain from it xx
• in reply to
you do make me laugh!
Doesn't need to be a long time sufferer, even in the time you've had it, has it progressed much or pretty much the same as when you were diagnosed?
You've reminded me, my consultant asked if I suffered from psoriasis and I said no, my sister has it badly but not me....... 10 mins after leaving I remembered that my ear does flare up from time to time, possible psoriasis but I assumed it was cheap shampoo! Do you think |I should mention it now? does it make a difference?
My sister (who has psoriasis) is currently undergoing various tests also, lots of stomach/bowl/period problems, I wonder if it maybe an auto-immune disorder of some sort...
Yes, I have been rinsing them with boiled water from kettle after washing (bottles), is a damson an apple? xx
• in reply to
damson is a plum fruit lol psoraris should be mentioned/.. link. bowel is auto immune too and can be liked with ra.. inflammatory bowel disease and ra both linked,,
Shall I answer about baby bottles ... done more than my share of those in my time or RA? Well I think in view of the fact Angela has dealt with the bottle problem in her own way ... I'll talk about my experience of RA progression!
It's April 1988. It took nine months from the onset of problems, pain in my feet and ankles which I put down to more walking than I was used to after the birth of my daughter to seeing a Rheumatologist. During that ‘waiting period’ I returned to work after maternity leave but problems quickly mounted. Climbing stairs, pulling my chair out from under my desk, opening drawers, opening large files, sitting for long periods, fatigue …
The appointment took place just before Christmas and two days later I couldn’t move; I was in agony, burning up, nauseous, very tired. I had never experienced this sort of pain or distress before! I was prescribed high dose Prednisolone and Chloroquine (successful treatments were few and far between in those days and steroids were the accepted way forward). In the following months I lost three stone as my appetite disappeared: I was only nine stone to start with! I could barely walk, I couldn’t look after myself, everything was so painful. I had a baby daughter I couldn’t look after. I was not well enough to return to work and a year later, June 1990, I was medically retired.
Things settled for a time, largely due to pregnancy remission, twice. But three months after my youngest was born, 1994, it was back with vengeance. I am back on the drug regime and the following six years were a time of trial and error with a modicum of success thrown in; gold injections, sulphasalazine, leflunomide, azathioprin, methotrexate and the rest. Regular blood tests merged with numerous visits to the baby clinics, hospitals, nurseries and schools. Each drug was going to be the one for me, the one that would give me back my life, the one that would see the back of this wretched disease. Each drug worked for a time and hopes were raised … but then, without reason, efficacy dwindled and hopes were dashed.
Then dawned the era of anti-tnf At last a whole new ball game! I am put forward for a trial of Infliximab (Remicade). The results of the infusions were literally amazing; I had my life back and with it I was able to do many of the things I believed I might never do again. Although I had a lot of joint damage from poor disease control over the first 15 years at least things steadily improved. Infliximab failed after 12 months and I moved onto Enbrel. Another drug which has worked really well since starting it in 2004, most of that time in combo with methotrexate.
How am I now compared to then? Wow, a difficult one! The RA is largely controlled by meds, I have the occasional flare, I get very tired very quickly. I do things at my own pace and I would say I am well. Most people meeting me for the first time would not think I have a problem. I am not in a wheelchair and usually don't need walking aids, although I can't comfortably walk far due to the damage in my feet, ankles and knees. I have severe ulnar drift of my right hand and a long list of other joint damage. But heyho ...
All that said these days no-one need travel this route again. The medication is brilliant and there is a lot of hope for the future. Controlling the disease is the primary concern. No point wallowing in self pity, it really doesn't help, be positive, take the medication, it's a means to an end and nothing more. At 6 stone I believed I was going to die but I had so much to live for... and positivity costs nothing!
These are excerpts from my blog (sore hand, can't type too much today!) "My Living Rheum" nras.healthunlocked.com/blo...
Lyn x
• in reply to
Thanks again Lyn,
What I'm getting from this is a bigger picture of RA, as sparkle suggested ''more people on this site with active disease'' makes sense as this is when we require support and where better than here?.....
It's good to get a bigger picture overall as including good periods and remission periods. I remember being at my worst but thinking how good it would be to be able to pick up baby, reading abook, lie down on my side ect..... now I appreciate all these simple things and make the most of my good days. I love your positivity x
Hi Wiliby. Babies? I always sterilised until they stopped using them. Very odd! eating the cat's food in one hand and drinking juice from a sterilised bottle. Oh well! they have lived to tell the tale......Anyway RA. I have had it for 9 years. I was very poorly at first not just with pain but ill. I was started on mxt and hydroxy after having general steroid inj. I soon became much,much better. With time RA got worse and mxt had to be increased 4 times in all then put on mxt inj to work better. I also came off hydroxy because of a problem with my eye. After a while on inj I was in remission for about 8 months with small flare ups, no worse than doing too much ironing or typing. And life was almost normal.Then I had to stop meds because of a breathing problem last october and it just went down hill from then on. I am still in the long drawn out process of trying to get stability on meds and eventually I hope to go into remission again. The trouble with these meds is that because they are so toxic they can cause so many other probs and then you have to stop. If you can go privately,( which I don't agree with, although have done it myself on a couple of occasions. I don't think you should have too,) you will get your tests done much quicker and be able to restart meds but if not test results take so long to come back that by the time they have discovered that you are ok to restart meds again you have a massive flare up, which is what happened to me and I haven't come out of it yet after 7 months. It is all very frustrating. The nurse just said take loads of pain killers. They didn't touch it and I was bedridden for a while with 23 joints affected. I had better knees than Wayne Rooney, hands like Mohammed Ali and shoulders like arni shwartz.... whatever. So sorry to be so longwinded but point is you can go into remission but how long for is anyone's guess. That's just my story. Will be totally different for someone else. Sheila x
I started with pains ten years ago, all over my body in the middle of a walking holiday. Had had a lot of stress for about ten years in work, and more in personal life. Happily for me the personal problems had settled down by the tiime the RA came to replace them, and my now husband was there to support me, go to appointments and general support.
I asked my GP to rule out RA because my mum had it and other members of the family and I really didnt want it, having seen what it did to them. GP said it was wear and tear, so I went to another doctor in the practice who sent me to the Nuffield Orthopaedic, our then local NHS specialist hospital. Not a brilliant experience at first - things have now changed. Long waits, put on the usual dimards + painkillers + occasional steroid, none of which really worked. I was tired, achey, felt like I had flu, couldnt sleep. Huge problems at work, which involved a lot of travelling. I found (still do) that I cant stand for long periods of time except when I'm moving a little bit like cooking or doing the ironing. I wish I'd taken a break from work at this stage - about a year in.
I tried yoga, acupuncture etc which gave me a boost. Yoga a good preparation for lots of blood tests as the breathing helps you to relax during a painful procedure. I was so unhappy with the hospital that I went to see a private doctor in London, he really just reassured me, and suggested I should try to get on to an anti-TNF which at that stage were really only at the stage of being trialled in the hospital. One consultant at the Nuffield saw me about an embrol test, but said I wasnt bad enough.
So I wrote to my MP about the waiting delays, the cancelled appointments the lack of consistent treatment. And fairly quickly after that I saw a new consultant who was lovely, and prescribed infliximab. It worked fairly quickly and the disease lessened its grip on me. Now, almost ten years and 60 infusions later, they say I'm more or less in remission. Well I get very tired, I have weakened muscles and have put on about 2 stone in weight for various reasons. I think that any improvement I'm going to make now is going to be based on that: I lost 5 kilos this winter and felt so much better for that.
Once, about 5 years ago my methotrexate was reduced and the symptoms came back so my dose is now a regular 20mg. I dont drink and I try to limit the things I do to one big thing a day. Its the small accumulations + stress which are the worst though.
I dont know what is in store, so I try to get as much out of the minute as I can. My mothers RA started at an earlier age, though I wonder if it was linked to the menopause. She didnt have the benefit of the new drugs, so her joint damage was much worse than me. She developed inflammatory heart disease which I think is linked to RA. But she lived a reasonably active life, travelling, going to a book group and a theatre club until her mid 80s. She seemed to have a period in which the RA was very active, rampaging through her body, then she was just left with joint damage and fatigue, it seemed to have calmed down a bit in her latter years. Lots of joint replacements though.
I think the end of her life was hastened by a couple of falls. I heard that tai ch 'i is good for balance and started going to classes in Oxford which were really good. But since we moved to Scotland I havent caught up with that yet. Its sgood exercise for flexibility, balance etc.
I am only three years in, I read with interest Lynn's synopsis, and am glad that finally she has an effective Dmard. My Aunt is very similar, once the damage is done its done and it happens oh so quickly! My poor Aunt will never be considered now for Anti Tnf, she is too old, and has several medical conditions.
Even with the treatment I have had my R foot and ankle are damaged, and my right wrist. I was treated very aggressively, and I understand now why, from what I have read here, early aggressive medical intervention is essential. A most recent study has proved (U.S. Mayo Clinic I think) that there is a 3 month window from diagnosis, and a better success rate & possible remission if treated quickly. I doubt anyone was even diagnosis within 3 months but I read that. Different world health systems treat patients differently for RA check out American sites for RA, and you will see a very different picture, for people who have insurance!
For Williby: The GP who gives out the flu vaccine every year in work was interested in my RA, he said 15 years ago while training he did a rotation in Rheumatoid Arthritis, and actually did'nt choose to specialise in it as there was no effective treatments to slow down the course of the disease. He said he wishes he had now, because the picture is so different, he was adamant that with all the developments in treatments for RA, you would not see in the future wheelchairs in RA Depts, an optimistic view you might think, one which I chose to believe, and one which my Consultant agrees. Williby stay positive & continue to seek correct medication, but bare in mind there is NO CURE, but they CAN slow it down, can take time to get right combination. My understanding is when your bloods at normal level damage to joints has stopped, this does'nt mean that you will never be tired or ache, but it is the most important issue.
Great reply Gina, I am pretty sure my consultant said something similiar on my first visit but to be truthful I didn't take much of it in as my head was spinning with the news......
I forgot until I read what you said, I remember now, something like ''a managable disease with the right medications''
I was diagnosed 2 years ago, although I had a good idea of what it was beforehand, and didn't want to hear it. My understanding is that there's no chance of any remission, nor is there any miracle cure. I waited 12 months for Enbrel, as my symptoms were so severe. I started last July: it wasn't the miracle I anticipated. I saw some improvement for about 4 months, then started to experience pain & inflammation again. I regularly take ibuprofen to take the swelling down on my hands, but on oramorph to ascertain the amount of pain I'm in before slow release can be prescribed. I still want to run like the wind!
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