I find the most difficult part of this disease is the severe fatigue. I've been 6 months on methotrexate and am seeing the rheumatologist tomorrow and want a strategy to deal with the fatigue whilst waiting, hopefully for another DMARD medication to do its work. I work fulltime but since my return to work 4 weeks ago following 5 months off sick, I have not managed more than half time and my brain struggles to work!
I have to pace myself with one day of activity, one day off and in the sofa. My son has narcolepsy and is prescribed Ritalin and modafinil to keep him awake and able to focus and Ive seen on line that modafiinil is used.
I'm currently taking 10mgs prednisalone which helps but I need to increase it to 20mgs for it to have a positive effect on my ability to function at work, so that's another possibility.
Any ideas? xx
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Barb66
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I can understand that this is tough for you. I find the fatigue can be the worst bit too. But to me your priority must be finding a treatment that controls the disease rather than propping yourself up with other drugs.
Fatigue is also your body telling you that it needs to rest - which I know is a bit incompatible with earning a living. But you do need to rest, sleep and eat well to have the best chance of controlling this without causing damage. I would worry that taking things like modafinil would actually lead to worse problems as you would be pushing yourself too hard whilst on it. Increasing long term steroid use can also lead to worse problems later on with adrenal insufficiency and bone problems.
Talk to your rheumy as maybe I'm being too gloomy about this. But this is a serious disease, so it does need some adjustments especially while you find an effective treatment. Can you talk to your employer about how best to help you in the next few months? And push your rheumy hard to review your meds quickly and not tinker about with little dose changes.
The problem is that I can't afford to take sick leave for the next year as Im down to half pay and I can't afford to go part time, so until I get DMARD that works Im stuck!
But you also can't afford to do yourself long term damage. You need to make sure that the rheumy really understands the dilemma you're in when you see him/her tomorrow and takes swift action for you. Many people find (including myself) find that the first drug lowers inflammation levels etc but isn't enough to control the disease fully. Sometimes the doctors just look at blood test results not the person so you will have to emphasise your struggles. Do you get any relief from steroid injections as they are gentler that oral steroid.
And you are covered by the equality act, so also encourage your employer to help too.
No I know and there's always a pay back. I saw the rheumatologist, he's prescribing me hydroxychloroquine, while telling me that the DMARDS dint treat fatigue and that I have no inflammation evident - neither on examination or in my bloods ( I still haven't had an explanation of why my platelets are high) so my pain isn't RA.
I came home and ate several chocolate bars and then felt very sick 😩
I agree with helixhelix that you should not be looking at drugs to push your body into doing more than it can cope with.
It's very tempting - but it's "draining your battery of the juice" that it needs for fighting the disease. As the control of your disease improves, so do the levels of energy. So push for better treatment options and keep pacing yourself in the meantime. From long experience of this disease, I know that ignoring the fatigue and ploughing on just builds up more problems and I get more ill as a result. The only person who looks after ME is ME.
You are so right and that's what I need to concentrate on. I find it difficult not feeling I have the rheumatologists' approval and acknowledgement of my pain etc as a 'genuine' symptom of RA and I know this is barmy!
Hi Barb. Don't be so hard on yourself, you have had 5 months off, it's hard to get back into the swing of things, it's like exercise, its hard at first and gets easier when you get used to it. Unfortunately tiredness and fatigue are part of this illness, so pacing yourself is important, also until you find the right meds for you to control the inflammation, rest is very important when you can. Make sure you don't have any underlying problems like iron, Vit b12 and Vit D deficiencies. I went years with low iron and ferritin levels until I was given b12. I have been taking steroids for years and have the side effects that go with long term use. The thinking nowadays is only very short courses and an injection for a boast. Humira has been great for me, I am retired now, so life is much easier. I worked full time for 20 years though. All the very best. X
Yes I find that the fatique can be bad but before I would fight it but now just pace myself and roll with the punches as you won't beat it so you need to rest up when it tells you
If you find something let me know. 5 years on and I am on nothing now and working full time, my life is crap as all I do is work come home and collapse and spend every weekend sleeping or resting.
Sorry I can't recall exactly, but after 6 to 8 months the fatigue and brain fog suddenly lifted over a 48 hour period.
Don't get me wrong, I have not returned to the person I was pre diagnosis but I am 75% back to the old me. It's good to be back on planet Earth and not in the land on Fatigue!
I hope things work out for you. MANY of us know exactly how you feel.
I do understand why you're asking the question Barb, we've all had & some still have the fatigue you're trying to cope with, & it's difficult it really is. But to consider medicating with a so called 'smart drug', a psychostimulant, I don't think is the correct way to deal with it & if you think about I don't think you do either. It's desperation setting in & I understand but I'd like to think you wouldn't have considered this if your son wasn't prescribed it. Much the same as you wouldn't think a DMARD would be prescribed for a splinter in his finger neither would your Rheumy prescribe modafinil I wouldn't think. I'm not sure how you'd be prescribed it, if your Rheumy would he could only do so off licence as it's not listed for fatigue of RD & it does seem from what you've told us previously that probably wouldn't be an option.
Have you considered if there's something other than disease activity contributing to your fatigue? Maybe you could ask your GP to check your vitamin D levels or is there any chance you could be anaemic? Maybe your Manager at work could arrange adjustments, even though you've had sick leave are they aware you're still not back on top form, could you speak with HR, let them know you're struggling just now? Another thing, have you room to delegate a little better at home? When you get home from work are you able to relax a while before needing to be mum & wife? Trying to balance things can be hard I know but we've all needed to, had to but the thought of it is worse than actually doing it.
I don't know if the online communities re modafinil are the ones I've read but they're not what I would call reliable, or responsible, in fact I read an honest BBC report, you may have come across it when searching, I recommend you read it. Steroids aren't really to be used in this way either, they're not without possible longer term problems. I wish I had a magic wand & all would be ok, hang on in there, have your vitamin levels checked, eat well & try not to be everything to everyone. Hopefully at tomorrows appointment you'll be understood & you'll come away with recommendations & options. Take care til then & let us know how it goes. x
As you say though it's really not a solution and Im sure there is a down side. I've researched taking prednisalone for a longer period (luckily my dad's a pharmacist) and am now prescribed alendronic acid and ad cal to protect my bones until hopefully my combined DMARDS. Not sure what I'll do if it doesn't as I don't know what else to do but retire from full time work.
My rheumatology appointment left me feeling quite hopeless. He said that DMARDS don't address fatigue and as my ESR and CRP are all reduced now on the methotrexate, it wasn't RA neither apparently is the residual pain I have in my hands and feet. I'm also taking 10mgs of prednisalone so it's damped down the pain. He suggested it's my OA and I gave up trying to say it's quite a different pain and I only have OA in a couple of fingers. And he totally ignored me when I pointed out my platelets are still raised. He has though prescribed me hydroxychloroquine
I have though taken some accrued annual leave and reduced my days to 3 long days Monday, Wednesday and a Friday so I have a rest day in between fir the next couple of months and maybe the hydroxychloroquine with the methotrexate will make a difference
Sorry to have written such an essay, but this forum is quite cathartic getting all that off my chest! xx
PLM is a US site Barb, so whilst it may be appropriate RD prescribing there it's not here in the UK I'm afraid. I really do understand, seems you don't have a good relationship with your Rheumy, left feeling hopeless isn't a good place to be. I wonder if it would be better to ask your GP if he or she can recommend another Rheumy, or ask here. You could also request you have imaging taken of the joints that are considered affected by OA. I'm not for one minute saying you don't know your own body & the pain it's producing but a few years ago I was also convinced my increased pain was RD having a go, different from flaring because it was constant. Turned out it was OA, which I'd had in some joints since my RD diagnosis, but I honestly did think it that it was RD in different joints. Now that it's properly medicated & I do the correct exercises I only know it's there by my arthriticky DIP & knee joints & the occasional headache caused by it in my neck. I'm not saying this is the same for you but OA is quite often diagnosed earlier in life than it would otherwise be without a primary diagnosis of RD.
I did a quick search & found more info about modafinil which may be of use prescqipp.info/modafinil/se..., maybe your dad will help, no better person to help I wouldn't think.
I'm on a low maintenance dose of steroids, also prescribed a calcium/Vitamin D supplement (AdCal-D3) & have had 2 different bisphosphonates (alendronate & risedronate). At my last DEXA scan I was still borderline for osteoporosis (approx 6 years now) so that & what I'm including diet wise seem to working. I really do hope MTX with HCQ are the ones that bring you under control, that they also bring down the fatigue to a manageable level so you can function better. I'm really pleased it's helping talking here, it's the forum at it's best don't you think?! x
Ahh I didn't realise it was US site. I think I just wanted a simple solution to my fatigue- it's the RA here take a pill. I'm so tired of being tired and this is not a straight forward illness!
I think 8080 is right, it may be luxury for some but being afforded the time to heal, allow the fatigue to do what it will helps. Anyway hopefully double therapy will bring you under control & it's reaching it's end. Rest day today so once you're home cut some slices of cucumber, it'll ease your sore eyes. x
This is so interesting, nmh! ( and Barb! )..before I was diagnosed, I suffered from extreme fatigue,, not even yet taking the RA drugs. ( My pain was pretty much constant for a couple years ). I have taken various drugs for depression for many years ( genetic disorder in my case ), so I have a "psychopharm---ist" who monitors my depression/ drugs. The fatigue came on pretty suddenly, (over a couple weeks ), and after a few months, my Doc suggests "adderalll" ( I think its similar to the drug you were considering, Barb )..and I was shocked! I thought "what a dumb idea, to cover the basic problem with an energy drug!" And guess what? I am an American, and it must be accepted here! What?? As it turns out, I tried it for a month..the doc asks if it gave me "energy" ? I said " no, if anything it just slowed everything, and made me more calm" so he diagnosed me with ADD........My point here is, I guess we Americans must just search for band aids and it is very disappointing to me.
I was finally diagnosed, but not before I had a few months of almost narcolepsy episodes of fatigue day and night, then just went back to fatigue and pain. I started on MTX after diagnosis, then 3 more drugs, and the pain gradually "lifted. But it was not until I told my OH not to count on me for ANYTHING- , and I just stayed in bed ALL THE TIME. I think within about 3 weeks....the fatigue was gone and the pain was gone. and I have not taken any drugs since I got the Cimsia out of my system. I would not say I am in remission because I still fear the pain will hit hard again, but I'm making the most of the energy I have now, and praying it will continue for another week because my grandson is coming tomorrow ( I ❤him very much! ). I know I am extremely lucky to have a hubby who still loves his job, and allowed me this time to just "heal". I would suggest to anyone that MAYBE it was the UNINTERRUPTED "down" time..( and during this time I refused to feel guilty, which I think we all feel a bit, no? ). ...which just calmed my whole body. Even maybe just one week of complete "down" time? ( with no part-time work if at all possible )....Has anyone else experienced this?
This is what I detect from some of our US members here, overkill with medication, & they're fed up of it. I'm not saying it doesn't also happen here but consideration should be paid first, explore other avenues rather than just prescribing for prescribings sake, particularly when it comes to meds off license, is there not another option before pushing you out the door with something which could potentially cause the opposite effect than it's intended for?
I think that's what I need to plan for - a week when my OH is away and I can just stay in bed and read ... and in the meantime I'm going to make sure I do next to nothing on my days off to recuperate xx
Different diseases do need different treatments. I hope barb66 finds a treatment regime that helps without need for extra energy boosting drugsas with RA pushing beyond the limit can make things 20 times worse.
Modafinil isn't licensed to treat the fatigue of MS Barb, though as with any med prescribed off license of their GP is willing to take the responsibility of doing so that's another case. The UK MS Society states
"Modafinil (Provigil)
This drug is used to treat narcolepsy, a sleep disorder which causes people to sleep excessively during the day. It is sometimes prescribed off-label for treating MS fatigue. There have been several small studies looking at modafinil to treat fatigue in MS, but they have had conflicting results and have not proved the benefits of taking modafinil.
In 2010, the European Medicines Agency recommended that modafinil should only be used for treating narcolepsy. As a result, many specialists are unwilling to prescribe it for MS fatigue. However, it is sometimes still prescribed and some people who take it say it helps. Side effects can include insomnia and headaches."
Hi - I too have been struggling for over two years with fatigue. I was diagnosed with RA in 2015 and then fibromyalgia in 2016. While I took the RA diagnosis seriously straightaway I initially ignored the fibro. All of my markers for RA are good (blood tests, DAS etc) and so I am now focussing purely on the fibro. aspect by adopting pacing, Thai chi and yoga, multivitamins and diet.
It's early days but my fatigue does appear to be getting better. It may be the focus on fibro. or the fact that I have now reduced the drugs for RA. Either way I think it's important to keep trying everything.
Certainly something you want to talk to your doctor about. It works for some people and doesn't for others. Since everyone's medical background is different, see what your doctor says first. Plenty of people take Modafinil for fatigue but not everyone who takes it has the same conditions. Better to err on the side of safety.
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Has anyone had side effects from long term steroids?
short term steroid increase query 
I’ve been prescribed Hydroxychloroquine 
Fatigue: A case of good management? Or do meds help?
