Does anyone not suffer from fatigue? and has anyone had periods of remission?

[Hidden]

Hi Wiliby, always suffering from fatigue somedays worse than others. Remission wish I could say I'd has one but I haven't not in all the 17 years. I think having had RA a long time and with not much medication about when I was diagnosed enabled the RA to get a better hold of the body so I don't think that remission will ever happen for me now, but you never now maybe oneday!!

Such a beautiful baby I presume she is yours (i hope I'm right in saying girl) you should be very proud-gorgeous!!

Take care

mand x

[Hidden]

Hi Wiliby

I tend not to suffer too much with fatigue but I've developed a good pacing method over the last 23 years, needs must with a family! Also, I believe that some people will suffer unnecessary fatigue due to anaemia which is common in RA. The lack of oxygenated blood cells in the system can cause fatigue/severe tiredness and susceptibility to infections and other problems. It's worth getting ferritin levels checked regularly; there are easy solutions to this type of anaemia.

Remission is a difficult one. I personally don't believe there is such a thing, but that's only my opinion! The medics have different ideas! Like Mand I have never experienced what has come to be known as "remission". To me remission means being free from disease or being able to control the disease without medication. I have had some long periods of well controlled disease with minimum medication (Enbrel and Methotrexate). The disease almost invariably 'mutates' and springs back with a vengeance! However, with much better drugs and earlier diagnosis prognosis is so much better these days. Gone are the days of severe RA with long term joint damage, something to be thankful for!

Lovely daughter, fab photo

Lyn

[Hidden]

Hi Mand and Lyn, yes my daughter, she's just wonderful

Posted this pict after Summer/Alison nagging at me to do so!!! (hi Alison )

Yes, should have worded that better, I mean medically induced remission.

Maybe well controlled is a better term, if thats the case then I like to think I'm almost there (oh I hope I haven't jinxed myself)

Also Lyn, I can agree about our better chances with an early diagnosis, I am very very thankful for the way I have been treated, my consultant told me if this were to happen to me 12 years ago my outlook would have been far worse and only a small chance of disease control.

Fatigue caused by anemia makes a lot of sense (didn't someone highlight this recently here?) so I wonder at what level the HB count would that be at to make you feel so tired? I suppose it's different for everyone.

What do you think Mand? (if you don't mind me asking) do you have a problem with anaemia?

xx

[Hidden in reply to Hidden]

Yes always suffered with anemia problems, at the moment my HB is 10.5 and that's good for me. have had episodes on ferrous sulphate since RA diagnosis. Like Lyn said this does cause extreme fatigue and it is all about pacing which helps reserve energy. Pacing though is something that you get to grips with over many years mainly because you have to in order to live a better life with RA.

Amy is so beautiful, doesn't seem 5 mins since my son was that age, he's 16 now so make the most of it!! lol

Take care

mand xx

[Hidden]

nice baby lol and her name is?? what a cutie al last piccie.

My fatigue a bit better at moment. vaguely trying to pace myself!!

[Hidden in reply to Hidden]

Amy, glad your bit better today, will PM you x

[Hidden]

I know the lower limit for Hb (haemoglobin) in my MTX book says 12 for women. But I seem to have permanent fatigue, with my own Hb levels hovering around 12 to 12.5.

I think some of the fatigue comes from both the meds side effects and the mental effects of pain. And then again there is the tendency to depression... Pacing is my way of coping. My OH is quite used to me disappearing to bed in mid afternoon! Its weird how that wave of weariness suddenly arrives out of the blue.

I think that folic acid has something to do with blood oxygen levels, and MTX needs supplementing with it. And Sulfasalazine definitely has a link to anaemia.

(Wonder if Ferritin levels are checked regularly in a FBC? Must ask next time.)

[Hidden in reply to Hidden]

I don't think Ferritin is checked as a matter of course in the FBC; mine never has been. I asked specifically for it to be added when I went for my regular blood test.

Worth checking because so many meds can alter the fine chemical balance as well as the ongoing disease!

[LavendarLady]

Yes I agree. I suffer from fatigue and my HB levels seem to hover around 10.5 to 11.5. Only once or twice have they been up to 12. I also have to have Vit B12 injections as don't absorb it through food and was told I had pernicious anaemia. Flat panic at that point as that caused my grandfather's death many years ago. My father also had to have B12 so I wonder if it runs in families?

He was always tired as well particularly in later life.

Depression does not help either - I get severe bouts of that when nothing seems right and you wonder if it is worth carrying on but somehow we do. I often find I drop off in the afternoon in my chair for an hour.

Never had a medically induced remission unless you count massive doses of steroids in the early days but a sort of remission when everything settles down after a steroid injection and I seem to be good for about a month until it strikes again. I also take folic acid 6 days a week to help with the effects of MTX.

What a lovely baby - you must be so pleased with her. They grow up so fast unfortunately that they are little adults before you know it! LavendarLady xx

[kathgallagher]

I have just had a week's holiday and all I wanted to do was sleep. I have been very emotional as well - feling very down and if people speak to me I feel like crying even though what they said wasn't meant that way. My hb hovers around 10 - 11 Ferritin levels are not routinely done with fbc. Back to work on Monday but don't feel like I have had a rest. Gorgeous baby. Wilby did you ever try the Pavers shoes website for comfy stylish shoes. Kath Gallagher

[Hidden in reply to kathgallagher]

HI Kath, will have a look at that site, thanks, will never give up the quest for nice shoes thanks, she is gorgeous!

when I am aneamic I cry very easily as well, hope you get on okay going back to work next week

[cherry2]

Hi, ooh fatigue, its such a big issue for me, try so hard to pace but get so frustrated doing nothing. My joints since ive been on Cimzia are so much better but im sure the fatigue is worse, or maybe its just because my joints are allowing me to do a bit more? Will it ever improve? I think this is the hardest part to cope with and others don't see it or understand, its so much more than just feeling tired, its getting me really down now. However you are right that anaemia can cause fatigue and breathlessness too but my HB is usually ok. Had my monthly bloods done today- maybe that will show something as i'm not sure now whether i'm just feeling exhausted of ill.Has anyone else on anti tnf's found that it only helps with joints but not fatigue? x

[Hidden in reply to cherry2]

Hi there

My fatigue is my biggest disability. I am on another biologic which has kept my joints at bay but not solved the fatigue. Thats such a nightmare because its invisible to other people and I feel that I will never be able to make non auto immune folk understand how desperately awful it is to have to live with and manage this type of tiredness which is trully meta tiredness in my opinion and experience. And I am not someone who happily gives in to illness as an escape from responsibilities lets face it we all know someone who exaggerates their illhealth because it fulfills some other psychological need. ( I dont mean health unlocked!) I think I deserve an award actually for fighting back day in and day out to have some kind of life. I have carried on working partime and tried to pace myself etc. Fact of the matter is some things in life just suck and they arent fair. On of them being a serious illness like RA which so commonly causes chronic and enduring exhaustion and fatigue.

I dont have answers. Some people here appear to be in favour of positivity to lessen the more negativite effects of RA. there is an evidence base that it helps with pain management i think- not so sure about fatigue.

Oh and my HB is normally borderline at 11.5 too. I think everyone is an individual and you just have to find your own ways of coping. Thankgoodness we do get our better days which for me ( plus close family) tide me through.

Best to you Cherry hope you feel so much better very soon

fiona x

[Fionajane]

Hi - yes to the medically-induced remission! I'm currently on monthly infusions of Tocilizumab (Ro-Actemra), which has transformed my life. I started out on a trial, and now the drug company is funding my treatment, as the PCT won't. I'm not complacent - I assume, like the anti-TNFs, that this might stop working at any stage, but I'm enjoying the return to something like normality, with little/no pain and no fatigue. I'm more susceptible to respiratory infections, but I can live with that for the ability to work, do stuff with my kids etc. x

[Hidden in reply to Fionajane]

Great news and great attitude too! Always make the most of the good times .. long may they last for you

[Hidden in reply to Fionajane]

Thats great to hear! and no fatigue also, would love to hear more about how is was for you, how long have you had RA ect...

a bit cheeky I know but being newly diagnosed I'm looking for some hope (as I'm sure we all are)

don't suppose you'd write a blog? (I asked Tiasteph the same last week about diet tips; which she did; was very helpful to many of us)

and to follow LynW 'Long may they last for you'

[Fionajane in reply to Hidden]

Hi there - not sure about writing a blog, I prefer to stay 'below the line' (shy maybe!!). But briefly, I was diagnosed about 5 years ago, after a few years of slow-onset symptoms. Probably post-pregnancy. One year on Methotrexate, which was stopped when the Drs decided my liver didn't like it. Then about 6 months of nothing, oh dear - not good! Another year and a half on Sulfasalazine which did no good at all. By this time, my left hand was permanently clawed, I couldn't lift my arms, hands and feed swollen, I couldn't walk without pain. Flares could hit anywhere, but mostly wrists, shoulders (the worst!), fingers, ankles, toes and bizarrely, my jaw.

I was offered a place on the Tocilizumab trial two years ago. It took two days - yes, two days - to work. All joints moving and pain free. My feet still hurt, but that's joint damage, not active disease. Toc was approved by NICE about 9 months ago, for use where other biologics have failed. That's why my PCT won't pay for it, as I haven't tried any other biologics. I am grateful for the drug company continuing to supply this in the meantime.

I do get occasional pain, I'm told when the RA is trying to flare, but it's nothing too bad, not compared to what we're used to dealing with! I'm also told by the research department that some patients are beginning to lose the effects, but they don't yet know the percentages. My fingers are crossed (yes, I can cross my fingers) that I can keep going, and that Roche continue to pay!

Meanwhile, I have to be hyper-vigilant about cold and flu bugs (great with kids around), as this is a drug associated with increased respiratory infection. However, I've so far only had one serious chest infection, which was treated with antibiotics and steroids. (No hospital, hurrah.)

I truly hope that you find a good treatment, one that works for you. I know how lucky I am. All the best, Fi x

[Hidden in reply to Fionajane]

Thank you Fi, I do appreciate your story. I just want to find out as much as possible, (like you I was also diagnosed post-pregnancy) I read the stats about remission but wondered how it is for the ones who have achieved it...

2 days for a result, gosh that is amazing!

I have only just started enbrel (4 weeks) and pretty good so far but have a bit to go yet.

I wish all the best for you to, take care xx

[Gina_K]

Hi,

I have 3 things to say - pacing - napping & pacing! I am always tired, have highest energy levels before 3 p.m. fade fast after that, but a bit better since off steroids used to get terrible eye tiredness on them, but they were a necessary evil at the time. Post MTX dose on Fri feel tired for about 24 hours!

Yawn - nap time!

Gina.

[Hidden]

Thanks to all replies so far, so many questions and really appreciate everyones feedback, I'm learning so much from this xx

[mistertea]

I've had Inflammatory Arthritis for 2 years now, and I have to say it's very well controlled by MTX, and I've never had any fatigue issues even in the early days pre treatment.

Fortunately I went to the doctors within a week of it beginning and saw a 'specialist GP' within a few weeks and was very quickly put on Plaqunil (which I'm still on) which seemed to fix my knees. After seeing a consultant within 3 months I was put on MTX which quickly got all my bloods normal, and once they'd got the dose higher (15mg a week) my hands are pretty normal now.

Long may it continue.

I am both R Factor and CCP negative - the consultant doubted it was RA until he saw my ultrasounds. He was like "oh you weren't putting it on after all!"

I'm so grateful that there is effective treatment today. Reading peoples stories of how 20 years ago they were sent away with only painkillers is terrible.

I think I'm proof of how important it is to seek treatment and push for referals early via your GP - which was as a result of doing research on the internet when I first got symptoms.

[Edie]

I am 68 and 2 yrs ago was told I have RA. Methotrextate was given me and I never have had fatigue and now am off the meth...thats another story...no fatigue. RA never is in real remission. meds is a bandaid for it and controls it. Joint pain in the morning for me now and will really try not to ever take serious drugs until its needed again!