After years of thrashing around from dermatologists to gynaecologists through hip replacements, physio, anti-inflammatories and a whole lot else.. I finally saw a rheumatologist and had something of a diagnosis. Things seem to have happened so fast, since.
I'm feeling a bit lost about it all to be honest and wondering what the future holds?
I've just started MTX and am wondering whether it is normal to feel so tired?
(Within the last few months I've been given steroid injections and Hydroxychloroquine and now moved on to MTX and folic acid). I never seem to see the same rheumatologist and there seems to be a lot of assumption of knowledge. I'm sorry if I sound whiney, but my doctor has now told me he can't prescribe Sodium Diclofenac any more (the only thing that seemed to help at all!). I'm also not sure whether or not I can have a drink.. and whether or not I should be avoiding certain foods?
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MrsHouseMouse
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you don't say anything about how your inflammatory arthritis affects you but from the list of specialists & procedures it sounds as if you've been through the mill.
You call it 'something of a diagnosis' - is that because they say 'just' sero-neg. inflammatory arthritis rather than being able to tell whether it's RA or whatever? If so I know how frustrating that can be as I'm in the same situation (diagnosed with sero. neg. inflammatory arthritis in June.) For a while I was pretty sure I had psoriatic arthritis but now my Rheumy thinks RA so .... hey ho!
I've been on MTX longer than you, though. Started on 7.5 mg in June & now taking 25 mg. If anything I'm not as tired as I used to be - it's so hard to know what's what as the disease made me mega tired before the drugs. So with MTX I'd say hang on in there - It does take months to kick in and I've really been feeling so much better in all sorts of ways in the last few weeks. I even tried to do a little dance to demonstrate last night & managed to get my toe caught under a door ....!
Lousy communication with doctors and lack of time in Rheumy appointments sometimes seem to cause most of my problems. But it's pretty poor if you've not been informed about alcohol - they should have done that. MTX is not great for the liver so you should be limiting what you drink to about 3 small glasses of wine a week. Each Rheumy department seems to have its own ideas about this though - some seem to recommend no alcohol - so if I was you I'd give 'em a ring. (They should be pleased that you are addressing these things.)
As for food .... I've really found that light meals and loads of fresh vegetables and fruit help so much with this disease. Yummy lasagne with lamb and cheese sauce seems to bring me down a lot! Shame! I don't think there are any foods that you are definitely meant to avoid, though. It's more about what does and doesn't work for you.
Is Sodium Diclofenac a pain killer? 'Cos if so I'm thinking that you are in pain without it and obviously that is going to make you feel rotten (you do not sound whiney at all). This site helps so much & others will doubtless have more ideas. But in addition I'd suggest you write down the main things that are bugging you and talk to your GP or Rheumy nurse, especially if pain's a problem. So many of us here have found out the hard way that if you don't ask, you don't get with this disease. So you need to be a bit pushy.
As for what the future holds .... I've just got a card from a friend who has MS who I haven't seen for ages. I think his illness is much worse than mine but he's written 'DON'T WORRY!' in huge letters. It's easy to say, but I had the feeling he meant it!
Hi there, sorry it's taken so long to get treated. I'm also sero neg inflammatory arthritis, that's now firmed up as RA. And quite frankly the drugs have been fantastic for me. (I'm on MTX, sulpha and hydroxy) Compared to where I was when diagnosed, struggling to get out of bed, and in constant pain, I'm now skipping about like a teenager (well a middle aged woman's equivalent). It took quite a long time to get here, and various ups and downs along the way, but it's now a few years and I'm doing ok. So do please think positively about the future. The shattering effects of MTX does get a bit better, but fatigue is a bit of a constant companion. However, if you learn to work round it, and pace yourself, it is manageable. I eat very healthily, which helps me, but don't really bother about avoiding certain foods or unpasteurised stuff. And I don't really drink, maybe one unit a week. And if you smoke, then please try to stop as this is really bad news for people with RA. Take up gentle exercise instead if you can, as that also really helps.
As for sodium Diclofenac, the NSAIDS (non steroidal anti inflammatories) go in and out of favour with doctors and Diclofenac has had a bit of a bad press recently. But there are loads more, and one of them will work for you so get grumpy with your doctor and say that you really must have an effective NSAID. And ask for a stomach protector to go with it, lanzaprole or omeprazole. In the meantime Ibuprofen taken regularly does help. For pain management, especially while you're waiting for the other drugs to kick in, is better to keep topped up with painkillers. Also hot and cold packs, and other non chemical means.
But we've all been where you are, a bit baffled and apprehensive, and rather fearful. So don't worry about feeling as if you're whining, as there's usually someone on here to help. Just believe that things will get better, because they will. Pollyx
Normally at the hospital I attend, anyone with a new diagnosis sees the rheumatology nurse after the doctor and she goes through what the implications of the disease are and what to expect from the treatment you are started on.
If this hasn't happened, ask if it is possible. You may need to talk to the rheumatology nurse several times as new queries come to you.
If you haven't got a rheumatology nurse, write and say how helpful one would be!
And ask your questions on here - lots of experienced patients on here!
Thank you all so much for your answers. It means such a lot to me that you've taken the time and trouble to listen.
Feather, I think we've been through similar diagnosis patterns. I've had swollen ankles and inflammation for the last 20 years or so. Eventually, my hip collapsed - but because I was born with dislocated hips as a child, the assumption has always been that my joints have been suffering due to misalignment. Try as I might, I couldn't get anyone to answer why on earth this would be affecting my wrists and shoulders too! Things got very much worse after my hip repacement. I was also suffering from persistent pain and candida "down below". It was only when I was eventually referred to a dermatologist that she suggested psoriatic arthritis. Earlier this year, I finally got referred to a rheumatologist and and MRI scan was done on one ankle. He didn't think it was psoriatic arthritis but put it down as "inflammatory arthritis".
As for how it affects me, well.. some days I'm fine and can whizz about doing pretty much everything. Then suddently I will wake up with hideous pain across my shoulders, or with a foot or an ankle (or as today two feet!) that seem to "collapse" making it unbearably painful to put weight on them. Sometimes my techno-hip seems to play up, though they can find nothing wrong with it. The physio, however, is adamant that it's a soft tissue problem.
Like you, Feather I find that inconsistensy and lack of communication is probably the most frustrating aspect of it all. So far I've never seen the same person twice at the rheumo clinic and no, Oldtimer, I've never been referred to a nurse for advice really. I seem to spend most of my appointment time answering the same questions over and over... like "when did you have your hip operation" and "what did the consultant say"... when really, this is surely in my big file?? I know that they are pushed for time and doing their best, but it does make me feel like I'm swimming upstream sometimes. I think I will definitely follow your advice and ask to see one.
I've never smoked and do try to eat healthily. However, I do enjoy a glass of red wine and am not looking forward to having to give that up potentially!
The alcohol thing is very vague and inconsistent isn't it? One consultant told me it was fine to have a small glass every day... another said three glasses a week.. and the next said none at all! This was before I actually began the MTX course, so I guess it is dependant on the results of my blood tests? For now I'm playing safe and limiting it to one or two spritzers a week.
I'm glad to hear that MTX is working well for you Helixhelix and to hear that the shattering effect does get better is very reassuring. I find it tough to pace myself but am going to try harder!
Thank you so much everyone. I don't feel quite so alone in this anymore :o)
Welcome to HealthUnlocked! I work on the NRAS Helpline, so thought I might be able to help clear some of these things up, though as you say, the guidance on alcohol intake etc does seem to vary.
Most people don't tend to be told that they need to stop alcohol intake altogether, but you do have to be careful. The NHS Information that we usually go by suggests keeping 'well within the the maximum limits' which for women is 2-3 units pper day, so the occassional glass of wine should be fine. Your liver function will be checked regularly, so if your alcohol intake was too high and having an effect on your liver this should hopefully be picked up by these tests, but don't panic if it is ever raised, as this can happen from time to time, and they will decide at that point whether or not to take you off the drug for a while until things stabilise.
It is frustrating having to keep relaying your medical history, but unfortunately this is necessary. Consultants will look back at some information in your medical file, such as the last few clinic letters and they will get to know you better with time, but sadly there isn't the time for them to read through whole files for each patient, so easier for them to ask you directly. However, I agree that the lack of consistency can be a real problem!
The tiredness you mention is a common symptom and one that people often find the hardest to deal with. Drugs like MTX work by slowing down the progression of the RA and making it less active in your body, so hopefully with time this will reduce all your RA symptoms, including the tiredness, but be patient as it will probably take a few weeks to kick in.
If you ever want to speak to someone on our helpline in more detail, please feel free to call us on 0800 298 7650. We are available from Mon-Fri, 9.30-4.30.
It's so reassuring having contact with others going through the same thing (that sounds a bit selfish really as in an ideal world nobody would be going through this..but you know what I mean!)
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