Jumping the Gun?

Hi. This is the first time i have posted here so I’ll try to be brief but probably won’t manage that so please bare with me.

Over the past couple of years I’d been suffering with occasional episodes of painful swellings in a number of joints, most noticeably my wrists & fingers but also my knees & ankles. The knees & ankles I’d simply passed off as wear & tear from my football playing youth & more recently from abusing them on long treks whilst out following my passion for hill walking. The hands & wrists were probably a just mild RSI from my work, or so I’d convinced myself. These occasional instances then gradually started to become everyday occurrences from last October, especially in my wrists, fingers & shoulders. It felt like I was coming home from work each day and spending all my time wrapped in ice compresses just to get through my next shift. I've also lost all my energy. Some days now it feels such a huge effort to do anything. Even walking my Dog, which used to be my favourite part of the day, can now feel such a chore.

Being the world’s worst patient & a typical bloke I suppose, I finally bit the bullet and went to the Doctor. A few blood tests down the line and they have finally checked my RA factor. This has come back at a level of 299 and my Doctor has now immediately referred me on to see a Rheumatologist.

This is where I guess I’m jumping the gun. I understand a high RA factor level doesn’t necessarily mean I have got RA and can be a multitude of other things but from reading the informative blogs on here I can’t help but thinking “Yeah that’s exactly what I’m like.” This has brought a whole heap of questions & worries to my mind. As I turned 40 last year, I worry what it’ll mean to me & my wife as we’re hoping to start a family this year & time is running out. What should I be telling/asking the Rheumatologist & what will happen at my appointment? Is an RA factor of 299 very high and should I be worried? Or even looking ahead will this put an end to my mountain walking or should I just be grateful that I can still manage this? I feel a bit of a fraud as I seem to be getting off very lightly when I read how badly this illness has affected others on here.

I guess until the more informed Rheumatologist has decided what exactly is wrong with me I’m still in the dark but in the meantime any advice or RA knowledge shared would be extremely welcome.

20 Replies

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  • Charlie, fisrt of i am sorry to hear your in so much pain,it will get better over time when they get you meds sorted out. I am no clinition so i can't advise on drugs. Your ra factor is high and it looks like it might be ra or another related auto-immune disease. It will be nothing to worry about you can live with it. You speak about moutain walking, well for the time being probally not. When they get you sorted out with drugs and a bit of time you will still be able to do some walking,but i must say this again it will be with time.

    The best bit of advice i have been given is ra won't kill you,you just have to look at things you do differently. I don't think your partner having a baby will harm you,it will mean picking baby up differently. Things change when you have children and you adapt to their needs and that is how you will have to be with ra. There will be things that you will have to let go and then there will be things come into your life that you never thought you would do.

    Every body has a different effet to the disease from each other,whats a lot of pain in you might be a pin prick to someone else. Don't think other people are worse than you it just means that they seem to be handling things differently. It will also take time for any drugs you are given to kick in so you might not see a difference straight away so please be patient. There are people on here who are in the medical proffesion who will better qualified than me to talk about meds so pick their brains as they know better than anyone what the drugs will do and if they don't they will soon find some one who will.

    Lastly if you feel the need to have a rant because life is being very hard on you please feel free as someone here will always have a word with you to keep you going and up to speed on what you can expect.

    Hope this has helped. Sylvia.xxx

  • I'm not sure about giving up mountain walking. I think you should try to keep up with as much exercise as you can, if the disease is properly controlled there's a lot you should be able to do. I have found that tai chi has kept me flexible and if you're starting from a fit base, then you should be able to do quite a lot.

    If you're planning to start a family, that's worth checking with the rheumatologist as some meds can affect your fertility. But with the right care RA shouldnt rule your life. It may take a while to fiind the right meds - as Sylvi says. This can be a difficult time, but its really worth keeping on top of things - research what the drs are telling you - there's quite a bit of info on the web. And people here are amazing!

  • Sorry that you've found us, and it does sound as if RA is likely from what you describe. But really being diagnosed with RA is not the end of everything. I was very frightened to start with, but for most people getting on the right meds gives you back your life. I agree with Cathie that it's good to try to keep as fit as you can, but also don't push it too much until you get stabilised. At my worst point I could hardly get out of bed as my knees and feet were so bad, and the exhaustion was just flattening. But a couple of years on and I'm 95% normal, and that's the likely outcome for the vast majority of people now. So try not to worry about being in the minority that either struggle to cope with meds, or who have such aggressive RA that it's v hard to control.

    Oh, and I live in a tiny hamlet, 2000ft up in the mountains, and have just returned from walking through knee deep snow - so you don't have to give up the hills entirely.

    But also as Cathie says, do make it very clear to rheumy that you are trying to start a family as this will rule out some of the meds commonly used, or require an alternative conception strategy (trying to be delicate here....) It's because you mustn't conceive whilst on them, not that they have a permanent effect, and it takes 3 months or so to get them out of your system.

    It'll be fine, but for heaven's sake don't feel a fraud, as even if you have the most manageable RA it's still a lot to come to terms with. Polly

  • Something in your tone reminds me of myself when I was first diagnosed. I hope you don't have RA but if you do then it is a difficult diagnosis to swallow, like everyone says, the early days are the worst in terms of thinking 'what the hell is going to happen to me?' I too put swelling etc. down to everything but RA for quite a while. I was diagnosed with severe RA 2 years ago but after a tricky patch or two things have improved immeasurably and I no longer get the heebie jeebies.

    Although many posts on here are about drugs and concerns about drugs, I think that, overall, most RA sufferers go through a process of fearing the drugs but end up being fairly impressed by those on offer. There are quite a range of them so you often have to road-test a few before finding something that might actually work far better than you ever imagined. Like Cathie I suspect that having a good level of fitness is a real advantage in coping with RA - it attacks joints so having good muscles kind of supports joints and minimises damage (think that's how it works, anyway!). Plus being fit sometimes just seems to help generally.

    I feel like a fraud sometimes too because RA effects me so little these days. But last night I slept for 10 hours (can't stop bragging about this!) & lying in occasionally is one of the things that works for me, helps maintain my stamina etc. & therefore it is important to admit to myself that I am ill i.e. I'm not just a lazy cow, I'm doing my sleep therapy, dammit! For many of us minimal, but important adjustments make all the difference.

    If you have RA then you will probably go through some difficult times no matter what advice you get but it is an incredibly variable disease that does not necessarily stop you doing the things you need and want to do.

    The questions you have asked here are all ones to ask the Rheumatologist. I would also ask 'from your experience, what kind of course do you think my disease will take?' Some docs are way too cautious to answer such questions but some will, especially if you make it clear you won't hold a grudge if they get it wrong!

    In my very non-medical way I'd see the fatigue as your body's way of telling you it's sick of being ignored! So now you've decided to take action it is very likely that things will start to look up at some point. Good luck to you,

    Luce x

  • Hiya I'm Shirley I was Diagnosed with RA back in September after spending a lot of time unable to do anything because of my joints, At that time My RA factor was 689, I didn't Start my meds until i saw the Rheumy which wasn't until November,So i haven't been on the meds long, but even though i am still unable to return to work, because my job is very physical and demanding, I have come a long way, compared to what i was like 2 months ago. I'm sorry you have had to join this site, hope that you receive good news.. I was told to go into this site, which i found very useful on my first appointment etc, hope it helps you XX nras.org.uk/about_rheum...

  • This doesn't seem to be working now, try searching for nras.org.uk/about_rheumatoi...

  • Thanks Shirl. . . That's a big help!.

  • Firstly thank you all so kindly for taking the time to reply to me with your encouraging words. It's definitely beneficial to hear from your positive experiences how you cope. My Doctor was quite dismissive and bordering on the "pull yourself together man!" when I tried to explain about the fatigue i'm encountering.

    It certainly makes sense to try and keep up the exercise. Over the last year, since I first began getting troublesome knees after hill-walking I started using walking poles and now always strap my knees up with some pretty fetching Knee supports as a precaution. These have helped but i'm certainly going to listen to all your advice here & curb any over-ambitious plans until I have a clearer picture of what is going on. We're already booked up for two walking holidays in the Lakes this year so I guess it's just going to be a case of finding some alternative things to do on the painful/tired days I may have. Although I fear these may largely become pub based activities :-)

    I guess my concerns over trying for a family were more around the implications of meds & conception so it's good to hear that alternatives may be a possibility & it's definitely a point i'll raise with the "Rheumy" (see i'm picking up the lingo already.)

    I'm loving the idea of "Sleep Therapy" Luce . . . 10 hours sounds like absolute bliss. I just can't seem to sleep very well. If I wake in bed I can't stay there for long as I just stiffen up & I always feel like i've missed the best part of the day if I do ever opt for lie in too. I guess a change of mind set may be needed there.

    ... and helix (if I may call you that for short) the idea of trudging through knee deep snow to a tiny hamlet 2000ft up in the mountains sounds like my idea of absolute bliss. I'm sure the reality of doing this day after day isn't always so heavenly I must admit.

  • and I was splitting logs earlier today, my son was much impressed. Just re. your doc's response to your fatigue - that is really not acceptable. If it is RA or any other auto immune disease, come to that, then fatigue is a nasty, bona fide symptom. (And for me the first one that the drugs eliminated).

  • Errr... long afternoons in the pub may not be on the cards unless you really, really like orange juice - tho' depends what meds you end up on and how perky your liver is. But your walking holidays could well be fine, you might just have to factor in more rest stops and some alternative routes. Stretching exercises and keeping muscles in good shape are v important, as this protects the joints so keep them going as much as you can even if your energy is low right now. Don't just rely on strapping.

    Anyway, you may well be walking with a heavily pregnant partner, so she might also appreciate a gentler pace.....

    One of the more annoying things about this is that it can vary so much day to day, but you'll work out how to manage it, so don't assume that you won't be able to do stuff. And I'm with Woolly in that dismissing the fatigue is a rubbish response from your Doc, it is very real, sadly.

  • Im so sorry to hear you are in pain when in acute pain/ flare best not exercise too heavily give the joints a rest the link given by my fellow sufferers is a god NRAS is a good source of info and support I found them and this site invaluable.

    swimming, walking, cycling , tai chi are all good for RA x

  • Hi and welcome. Everyone here has given you excellent advice so far. I don't know enough about conceiving on the drugs we take but you may want to read up and discuss this with your partner soon because the priority for most doctors in the early days is to try to hit RA on the head as aggressively as they can.

    I have three children aged 20, 17 and 15 and was only diagnosed about 14 months ago and wouldn't have not had them for all the tea in China (why would I want all that tea anyway?!) so I think you might try and start a family before you have the worry of being on these medications perhaps? Unlike women at the same stage you won't have to worry about the drugs crossing the placenta etc so it's only the point of conception and being well for the birth and beyond that are really important things to consider for you. But I would still read up on all the Disease Modifying Drugs now rather than waiting for a diagnosis. Doing your own research is really useful with rheumatic diseases because it's such a complex area and diagnosis can be so tricky. However you do have a loud clear positive rheumatoid factor at least. This may seem very scary and worse to you but people who don't have these positive blood markers are often in a much more difficult situation because their diagnosis can come well after the joints have been damaged - and damage is ireversable.

    So if I were you I would try to focus on the positives now - which is that you've been referred and will be taken seriously because of your very positive RF - and you are fit and have a passion which hasn't yet been thwarted by arthritic pain. Having a baby/ young child will also change your lifestyle and outlook and put limitations on what you can do but in a rewarding way - so in a way these things can make us more appreciative and determined about our choices and ambitions. If you are diagnosed and put on disease modifying drugs they do take time to work for many but once they do you may well get your life back just as fully - remember that a lot of the people who come on here are needing help and support because they are the unlucky few whose bodies have not responded so well to the drugs. Some of these will have a positive rheumatoid factor like yours but some don't. There are very few hard and fast rules with inflammatory arthritis I have learned.

    Take care and let us know how you get on. Tilda

  • Thank you so much for those kind and informative words, they have certainly helped ease my concerns this morning.

    You're right, my Doctor just told me my RF was high and she was referring me. My immediate response was to think that high must equal bad then. I hadn't considered that it may actually be a positive pointer to getting an early diagnosis and perhaps getting some treatment. It definitely feels better looking at it from a more positive angle.

    I'm also taking heart from looking at the things I can still do, as you suggest. It's difficult not to think of those who are not as fortunate as myself but it's quickly dawning that people on here are after/offering support not sympathy.

    I will definitely let you know how I get on with my appointment. I'm sure it'll raise a hundred other questions that I'll need help with.

    In the meantime I shall be heeding your advice & getting myself as much knowledge as I can in preparation.

    Thank you again. Charlie.

  • Hi Charlie

    Just wanted to expand to what Tilda has said about conception and considerations that men on RA medication might need to make.

    Firstly, I should say that much of the first appointment will be focusing on confirming a diagnosis of RA. You can read more about what to expect in these early appointments in this article on our website:

    nras.org.uk/about_rheumatoi...

    However, if the diagnosis is confirmed as being RA, the next consideration will be what medication to put you on. It is therefore important to bring up the issue about conception early on, as this could affect which medications are prescribed. For example:

    - Some drugs are dangerous for either the man or woman to take while trying to conceive, and if you started on these drugs you may have to be off them for several months before trying to conceive.

    - Some drugs can affect male fertility.

    - More positively, if a drug is considered safe for you to take during this period, the benefits of controlling the RA symptoms can be helpful.

    The decision to delay treatment in order to try to conceive before starting on the medication would be a big decision to make, and should not be done lightly. There would obviously be no way of knowing how long it would take to conceive, and it is generally recommended that people with RA start on treatment as early as possible, in order to get the disease under good, early control, and this tends to give the best long-term outcomes. This would therefore need to be weighed up with any decision to delay treatment.

    It is worth making a note of this and any other things you want to ask your rheumatologist at the appointment, but keep in mind that the first appointment will focus mainly on diagnosis.

    If you want to talk any of this through in more detail you are obviously more than welcome to call our helpline, which is available Mon-Fri 9.30-4.30 on 0800 298 7650.

    I hope that the first appointment goes well.

    Kind regards

    Victoria

    (NRAS Helpline)

  • In autoimmune diseases, fatigue is one of the symptoms most experienced by patients yet least understood and treated by doctors.

    When you first get a suspicion that you have inflammatory arthritis it is a scary time. But as others have said, it's not the end. I'm back on my horse!

    Good luck,

    Dotty x

  • Hi Charlie,

    :o)

    High Inflammation levels can be caused by other reason too. Best advice I can offer is listen to your body.....if it's saying stop then stop. You'll soon get used to the level of activity you can cope with. It's a double edged sword to start out fit when you get a condition. Being fit before hand will mean your body is in better shape to maintain condition well and recover from flare ups more quickly. The down side is, accepting you have to do less in order not to resemble an ice block every evening.

    'IF' you are diagnosed with RA, then some drugs do state you cannot conceive whilst taking them. If you and your wife have always wanted kiddiwinks and are financially able to cope then I'd say crack on and start trying now. Remember, RA is an auto immune condition, so stress will affect your body. So, in your financial appraisal, include implications of your ability to 'bring home the bacon' as it were......and that IF this was affected, what impact, if any, that would have on your family.

    ps.....always include your wife in your thoughts and feelings, you probably do anyway, but it will help both of you in the long run, to better understand :o)x

  • I remember how I thought when I was newly diagnosed - that my life would be ruined! That was nearly 40 years ago.

    But until just recently I was still walking in the mountains (not as energetically but some of that was just ageing). So I was still able to walk the length of Corsica on the Grand Radonne after treatment was sorted. Yesterday I walked down the hill and through the snow and back afterwards to go singing - yesterday was a good day. Now I walk around the mountains rather than up them so that I can still get out in them.

    You have to learn to pace yourself and be realistic about what you can and can't do. For me early aggressive treatment and exercise as soon as the worst of a flare is over has worked well.

  • Blimey....I couldn't do the up & over route on Corsica before I was diagnosed, let alone after! Well done you! Tho' it was the scary bits that were the main problem as I'm not good with walking on the edge of sheer drops, so I stuck to going round the island instead...Px

  • Your symptoms do look like RA. The sooner you see a consultant the better as the sooner you start the medication the better. I left mine a bit too late as I put the symptoms down to old age [i was 70yrs], I was bedridden for three months and eventually went private as the waiting list was so long. The medication is wonderful. I am back on my feet and walk miles every day. I learnt Nordic Walking which uses two poles and these get me up quite steep hills. Wnen I can't get out I walk on the treadmill in the gym. So you will be fine! All the best x

  • hello,

    You've had the best advice already but just wanted to add that my RF factor was 1210, for my GP, this was the highest she had seen along with my RA nurse. When I researched it I thought that was it, my RA would be aggressive and difficult to control but no, I was diagnosed almost 2 years to the day and my RA was under control within 11 months, I have no permanent joint damage and 90% better :) (I'm in medically induced remission!)

    I've taken up walking again, I manage the gym once in a while, it's not the RA that stops me but everyday things like work, children and husbands!!

    As for starting a family, I really hope you do, my youngest was 6 weeks old when I was diagnosed, when I was at my worst with RA she just made the world a brighter place for all of us!

    You'll get there, what you are going through now is the worst, my consultant told me on my first visit that this was a managable disease and it can be for many of us, just takes a bit of 'tweaking'

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