Methotrexate and fatigue

mamadeesix

So I've been on Methotrexate for 10 weeks now. My joint pain may or may not be better, depending on the day. No major change in that area, if I had to classify it.

But I am SO tired. I thought that this was supposed to help fatigue by getting inflammation under control? I am more tired than ever. Like waking up tired and needing to sleep in the middle of the day because I. can. not. funtion. tired.

I have also had a sore throat for weeks, my hair is thinning faster than ever and my Raynauds seems worse (that could be the season, I guess) But generally, I feel just unwell a lot of the time. Have tried the elliptical and had to quit 3 times this week after 5 min. b/c of heat palpitations. Last night I did it ok, but today is a no go. So confusing.

Dr. also put me on Fosamax due to low bone density, but it seems the MXT more likely to blame?

I have 6 pills of MXT before refill. One week till follow up dr. appt.

Any insight into this med? I get that they are trying to prevent joint damage, but there has to be something to quality of life, also. Can there ever be a "watchful waiting" approach to RA? Like maybe have x-rays and bloodwork every 6 months (or 3 months) or whatever......and then do the heavy hitting drugs if there is a change for the worse? I am sero-neg, so I don't even have the scary bloodwork results to motivate me to continue meds that seem to make me feel way worse overall.

I am so frustrated. And so tired of fatigue. I am trying to eat well, sleep well, etc.....to lesson the effect of those variables. But man. I don't know where to go from here.

BettyMac

Hi Mamadeesix
Sorry to hear you’re feeling so bad.

I think doctors tend to prescribe DMARDs, such as methotrexate, sooner rather than later these days. This is to prevent the inflammation from damaging our joints and our major organs.
Such drugs can take a few months to kick in and become effective.

I’ve been on MTX for some years now. For me, the main side effect is nausea but this has been reduced by upping the folic acid, on the advice of my rheumy.
Different doctors prescribe differing amounts of folic acid but it’s something everyone on mtx must take to reduce the less desirable effects of the drug.

I don’t know much about Fosamax but am wondering if this might be responsible for the way you’re feeling now. Definitely worth asking at your appointment next week. There are alternatives to Fosamax.

One of the most useful things I’ve been told along this RA journey is - be prepared to fight for what you need in order to deal with this disease. Of course, when one is feeling so exhausted and depressed with it all, this can feel impossible.
My own weapons are research, organisation and documentation.
I write everything down when I’m having a flare.
Keep a brief diary of symptoms and their effects - which joints hurt, sleep disruption, needing help with activities and dressing etc.
Print out a copy to give the rheumy. I use a highlighter pen to flag up the joints I’ve noted so the poor doctor doesn’t have to read every single word.

I hope you get this resolved soon and start feeling better.

stickywicket

i don't know anything about Fosamax. Meth can certainly cause me to feel wiped out for a day - usually the day after I take it but occasionally the day after that. But RA itself is much more effective for that utterly shattered feeling

Whether or not the DMARDS are working tends to rely more on our blood tests than on how we feel. How are your inflammatory levels now? I'd guess the meth should be doing something by now but sometimes either the dose needs tweaking or an additional DMARD needs adding.

It really isn't about how we feel but about unseen, irreversible damage being done. Believe me, if you don't take the meds now you'll be wishing you had done in ten years or so.

mamadeesix

Betty,

Fatigue isn't one of the main side effects of Fosamax, but I will surely ask about it. And I am documenting everything. I have a journal. Sometimes it's easy to see why a particular day I am worse for wear.....the day or two after MXT for sure, but also if I don't get enough sleep, or eat a ton of sugar or don't eat enough. Sometimes it doesn't add up at all. But the overall trend lately is to feel like a bus hit me more often than not.

Sticky, if bloodwork is the indicator of how well DMARDS are working.....then what about those with sero neg? It's so hard to know.

I hate to give up on it after all these weeks if relief is around the corner.......but I hate feeling like this all the time. It doesn't seem like a flare you read about, but more like an overall state of being lately. With a good day or two thrown in once every couple weeks.

dreamdaisy

I have a sero-neg form and know my disease is under control because my inflammatory markers are very small. My other tests for kidney, liver and other stuff also lie within the normal parameters. When things are not as they should be a rise in any of the figures reflect this.

How I feel varies from day-to-day but I never have a day where I feel as though I can take on the world. Moderately grotty accurately describes my norm, I am tired at the moment but that is because I am away and coping with uncomfortable living on a grand scale. DD

mamadeesix

I have a sero-neg form and know my disease is under control because my inflammatory markers are very small. //////

Can you explain this a bit more? Being sero neg, I am confused about how to tell what's going on.

My other blood work was ok, except liver ALT, which was 40. That is elevated and not my norm.

Also, anything having to do with white blood cells was down, compared to my normal, but those were still within normal lab range.

dreamdaisy

Brief reply as broadband is rubbish (I'm on holiday).

Being sero-neg has never been an issue for me, it just makes it harder to explain to others that I have a form of arthritis which isn't called RA. My bloods measure my CRP and ESR, both inflammation markers and I know the meds are controlling matters as they are below 5 and often too small to measure. At my worst they were in the 160s and 170s.

My liver fluctuates between 18 and 35 and does not cause any concern. One medication, back in 2006, inflated them from 18 to 685 in three weeks but I felt fine. Others were far more bothered than me. DD

mamadeesix

Hmm.....well my CRP and my ESR have always been within normal range. So no help there.

It's difficult mentally to me ......justifying a med that seems to be making me feel worse..... when I have no blood work to suggest I need it or that can prove it's doing anything.

I know I have to trust my dr......I'm just trying to do the right thing overall.

If my blood work is always normal (save the latest liver ALT), then what about x-rays? Couldn't I just get x-rays every 6 months or a year to see if the slight erosions in my baby toes gets worse or shows up somewhere else? Or is it too late, then?

stickywicket

Maybe this, from Arthritis Research UK, will help you to understand how complex the whole business of diagnosis can be https://tinyurl.com/y73owtw4 .

I can understand where you're coming from but I'm not sure that regular x-rays would be enough as the above link tends to suggest.

I realise that you feel it's the meth making you feel so rubbish but, if the meth isn't yet controlling it, isn't it more likely to be the disease itself? When do you next see your rheumatologist?

dreamdaisy

How you are feeling is reflective of the disease, not the medication. I have rarely come across someone who is well-controlled on one medication, I've always been on two or three in addition to the others which keep me ticking over. Doesn't bother me as that has always been my life but for the 'I've always been healthy' bods the mere thought of that must be disconcerting to say the least. DD

mamadeesix

Thanks, guys. I appreciate it. Dreamdaisy, I get what you are saying......this is relatively new for me. Two years ago I was doing 5k mud runs and working out every day. Now at age 52, after full hysterectomy and now RA....I don't recognize how my body behaves or functions.

sticky, I see my dr. on Monday. We'll see what she says. How long does it usually take to get relief from MXT? I guess I thought after 10 weeks I should.

stickywicket

They normally say give it up to 12 weeks but, as I said, if your bloods look good then it's working however you feel :roll: Folic acid can help mitigate against the side-effects. I can't remember how much you're taking but some docs will put it up to 6 days per week.

I think it's pointless, and probably, unhelpful to consider 'going back' to where you were healthwise before it all started. Find 'the new good'

dibdab

Hi there,

As others have said, sometimes our blood results (inflammatory markers like CRP) suggest things are ok, but our pain and fatigue levels tell another story.
Like you I have sero-negative RA(I don't have the rheumatoid factor) and it has a huge impact on my ability to function. I was taking methotrexate, sulphasalazine and plaquinel, but methotrexate left me completely wiped out for at least 48 hours of every week so it was swapped for Leflunomide. I get less exhausted post meth injection and no longer have the horrible nausea, but still tire quickly and have fairly regular pain. At the moment I am in all kinds of pain and utterly wiped out, but have been supporting my 89 year old mum through a hip replacement and the post op recovery period so I understand where the problems are coming from.

It may be that your rheumy will swap the meth if you are finding it really debilitating, we all react differently to different drugs. Keeping your journal is a really good idea-I used to take my rheumy a list of dates when things were problematic and some background in terms of unusual life events.


Deb

dreamdaisy

How are things going now, Mama? DD

mamadeesix

Headed to dr. today. Will let you guys know what she says.

Also......any thoughts of joint pain/tendon pain being a bit better were dashed this week when I started exercising again.

I started slow....5 min. on the elliptical, then 10 at the most. Now my toes/feet, knees, hip bursitis, elbow.....they are all complaining again. Sigh.

mamadeesix

So the doctor took me off the MTX. Said by now it should be helping.....she could increase it but my liver numbers were up and the side effects were not good, so on to something else.

For treating the RA, she wants to try PLAQUENIL. Which is for an anti malaria, but also for RA. It also treats Lupus....which I don't think I have or I would have some indication with bloodwork, I believe....but am not 100 percent. I do have the nose/cheeck rash or flushing....but without bloodwork to suggest lupus, they are calling that rosacea.

Anyway, because of the fatigue and other pain, which isn't necessarily joint pain (tendons?) she wants to also add Abilify--I suspect she still thinks there may be a Fibro component, given the fact that this med is for Bipolar, Schizophrenia and major depression--none of which I have. But it's also used for Fibro. Not sure at ALL if I am actually going to take this one. If I do, it won't be until I know how the Plaquenil goes. I don't know.

So off one drug, on another. Bloodwork and recheck in 3 months.

Has anyone used Plaquenil?

dibdab

Plaquinel was the first med I tried, I believe it to be a really mild DMARD- my only advice would be take it with or after food to avoid nausea. My rheumy then added in sulphasalazine and methotrexate. I still take a combination of plaquinel, sulph and Leflunomide. I read that the triple therapy is effective because it layers up the effect of the DMARD's. It's a real trial and error process to find what works for us, but I hope you get some relief soon.
Deb

frogmorton

I also take plaquenil amongst others.

It doesn't cause too much trouble although you should make sure you have regular eye tests.

It wasn't great for my belly when I first started on it as I remember :? for a while I had to take it in the middle of a meal, but not nowadays.

Best of luck and let us know how it goes

Toni xx

turtle

mamadeesix wrote:

Betty,

Fatigue isn't one of the main side effects of Fosamax, but I will surely ask about it. And I am documenting everything. I have a journal. Sometimes it's easy to see why a particular day I am worse for wear.....the day or two after MXT for sure, but also if I don't get enough sleep, or eat a ton of sugar or don't eat enough. Sometimes it doesn't add up at all. But the overall trend lately is to feel like a bus hit me more often than not.

Sticky, if bloodwork is the indicator of how well DMARDS are working.....then what about those with sero neg? It's so hard to know.

I hate to give up on it after all these weeks if relief is around the corner.......but I hate feeling like this all the time. It doesn't seem like a flare you read about, but more like an overall state of being lately. With a good day or two thrown in once every couple weeks.

It is the fatigue that keeps me from trying the Meth. I live alone and am frail already. I cannot afford to be very fatigued. Yet the Paquil is not working: the arthritis is getting rapidly worse. Don't know what to do .

I had an appointment yesterday with the doctor. The office called me at seven in the morning to say he was ill. Next appointment is late October.

Feeling discouraged, hoping that I can tolerate the injections.

mamadeesix

turtle,

I feel for you. I hope you can tolerate them, too. I seem to be so sensitive to anything that can cause fatigue. If it can, it does in me. I told the dr. that I walk such a fine line between tired and fatigue every day it doesn't take much to push me over the edge.

I hope you get some relief soon.

dreamdaisy

Everyone walks a fine line including the healthy. When you're healthy you don't know you're walking it, why would you? It's only when one is suddenly shunted from that very narrow path that realisation of what was taken for granted comes, alongside astonishment and indignation that it's gone. DD