Hi there @Luthier, I just picked this thread up from searching plaquenil… Are you still taking it? And how are you finding it (is the improvement still holding? And have you had any side effects from it?)?
I ask because plaquenil has just been added to the mix I’m on and I’m curious to see how others have found it (I’m on Mtx and tilcotil too), that’s why I did the search
@Grandma_J… it was interesting to read that your husband had been on plaquenil and didn’t think it was working so well, ermm… until he went off it… I’ll be keen to hear how going back on it goes for him… from what I have read there doesn’t seem to be any problem with stopping/starting it.
I understand how we can feel something isn’t doing soo great because we are still in pain (that’s kinda where I’m at right now, even though my pain levels have never been exceptionally high). I know if I miss a day of the tilcotil my body soon lets me know and recently found similar with missing a Mtx dose (I really didn’t expect missing one week would make that much difference, but it seems it did)… I am hoping the plaquenil will help to reduce residual pain a little further… I guess it’ll take a few weeks to find out
I hope you are all doing as well as you can just now
Hi @Janson,
Sorry to hear you’ve had more added to the mix.
Plaquenil, for me, took my constant pain level from an 8 (or worse) down to a 3-4 (sometimes a little better than that). It’s definitely not a cure-all for me as I’ve been going thru a flare (mild) for the past four weeks, BUT, my bad days now are still better than my best days before getting on the Plaquenil. This is the first flare since starting it but it definitely is better than my last one (lasted a year and a half with that one / no Plaquenil / no fun!!).
With me, I take it faithfully when I’m suppose to. Probably more afraid of going backwards to the way I was before it (ugh!!). It does take a while to kick in (usual is 3-6 months) but I started noticing an improvement around week 6. As far as side effects go, I’ve had none up to this point.
I, too, will be interested on how @Grandma_J husband makes out with going back on it. Curious to find out if it takes as long to take effect second time around.
Sorry to be so long winded. Hope it gives you relief. Keep us posted on your results.
@Luthier: Thanks for the prompt reply Fran, most appreciated!!! I’d have to say I would have put my pre-meds pain level mostly at around a 3-5, (except for my back which has been a problem for so long now I try to ignore it )… so a lot lower than what you were experiencing… the Mtx did help, certainly with my hands, but hasn’t done much for my ankles/feet, or anything other than hands, but now I’d say at worst my ankles would probably rank around a 6 (nearly two years down the track from starting Mtx), more around 2-3 on an average to good day… mostly a darn nuisance, perhaps I’d be asking too much from any med to hope pain levels could get below that, I’m just tired of the consistency of it. The Mtx also reduced the fatigue quite a bit, I have gone from needing 3-5 hours sleep every afternoon, to where I now only sleep in the afternoon for 1/2 to one hour and can do 3-4 days without a nap at all (a huge improvement)… I guess I’m hoping that the plaquenil might help knock the remaining residue pain and fatigue into submission… I do understand it could take time to take full effect (if it in fact will do so) and maybe keep flares down to a minimum too. It would just be sooo awesome to feel mostly human again
Yep, I sure will let you know if I find any benefit from it, or not… we did try Leflunomide (aka Arava) for a few months, but unfortunately I didn’t notice any further improvement from it, and did have quite a bit of hair loss on it too (I wouldn’t really care if went completely bald if the stuff had been effective with pain and fatigue, but no such luck lol), so we’ve now stopped that… disappointing that it didn’t help as much for me as it often seems to do for others.
I do hope your current flare doesn’t hang about any longer!!! Enough is enough, already!!!
Edited a few minutes later: I forgot to mention that the Mtx has definitely all but cleared up the minor psoriasis too… so it is definitely doing quite a bit of good
@janson
Hi Jean,
Looks like you’ve been to this dance for a bit. I had gone for 15-18 yrs. before being diagnosed. The group of doctors I had at the time never went any further than “seeing a symptom…here’s a pill”. I had to change my PCP to finally get answers. I now have 9 different specialist besides my PCP. Even with this flare, it’s better than what I went through before.
I agree with you as it being quite a nuisance. It’s like having a little kid inside you, flipping switches to watch the pretty colors of pain and inflammation. Sometimes the colors stay on for a while, other times, not so long. At least , it’s not life threatening. I know a few people with stage 4 cancer. I can deal with what I have going on. When and if it changes, I’ll worry about that then.
Although I have to admit, I’m jealous of the nap time you’re able to get in the afternoons. I’m self employed and can’t afford the luxury of an afternoon nap (at times I would kill for one). Unfortunately, there are the days where, after supper, I can fall asleep in the middle of a conversation with someone (usually the wife…thank God, she puts up with me). Many a day where after dinner, I’m just wiped out. Just can’t function. I believe you can find plenty of people on here with the same fatigue factor as what we go through.
I think if you do a search you will find some people mention a vitamin D deficiency possibly adding to the fatigue. I ran it by my PCP and he put me on 50,000 units, once a week, for eight weeks, and that seemed to help. I was also starting the Plaquenil at this point. For now, the fatigue is minimal compared to before.
Hopefully, the Plaquenil will help give you a little more relief. There are the days where it gets a little tiring dealing with things but the good days make up for the bad (I enjoy the good days much more than I had before all this started). I’m sure a lot of us look at our days differently than we did before. It’s all part of the dance.
@Luthier
Hi again Fran. Thank you so very much for great reply!! I was lucky that a change of GP (necessary as I was left unable to drive after a small stroke affected my visual fields, therefore couldn’t get to the out of town GP I had previously) put me in the hands of a lovely man who had previously worked in rheumatology and was pretty quick to pick up on what was going on… I’d say I’ve been having problems with this since a teenager (so a little over 40 years), but as it wasn’t in my hands and feet (until a couple of years ago) so symptoms were always put down as chronic pain syndrome, or some minor injury etc. It was a couple of years ago that hands and feet became involved which seems to have rheumatology taking things a little more seriously… although they are still a little reluctant to put a definite label on it all.
Haha… I like the analogy of a little kid in there flipping switches But yes, I too am very grateful that things are not a lot worse, as you say some folks do have way worse to deal with.
Oh, please don’t be jealous of my being able to fit in nap times… believe me, I’d much prefer to be working… it would be awesome to be able to support myself without the need for a benefit (it makes shuffling $'s a stressful thing when there aren’t enough to shuffle )… unfortunately at this time of my life working simply isn’t an option… maybe sometime in the future But yes, fatigue seems to a common theme around here, at least until the correct mix of meds is stumbled on.
I must look into vitamin D again, I was given a short course a few years ago, I don’t recall it made a lot of difference, but definitely worth a revisit now, thanks for the heads up on that!! Here’s hoping the plaquenil helps clear up what is left of that, it’s great to hear that it has helped your fatigue levels, very encouraging for me.
I too know that things are definitely better than they were pre-meds and I’m grateful for that… as I say, perhaps my expectations of the meds are just a little too high, but I do live in hope and intend to do my very best to get on top of this thing!!
Thank you once again for you detailed replies, most appreciated!!! Wishing you all the best and pain and fatigue free days ahead!!
)… so a lot lower than what you were experiencing… the Mtx did help, certainly with my hands, but hasn’t done much for my ankles/feet, or anything other than hands, but now I’d say at worst my ankles would probably rank around a 6 (nearly two years down the track from starting Mtx), more around 2-3 on an average to good day… mostly a darn nuisance, perhaps I’d be asking too much from any med to hope pain levels could get below that, I’m just tired of the consistency of it. The Mtx also reduced the fatigue quite a bit, I have gone from needing 3-5 hours sleep every afternoon, to where I now only sleep in the afternoon for 1/2 to one hour and can do 3-4 days without a nap at all (a huge improvement)… I guess I’m hoping that the plaquenil might help knock the remaining residue pain and fatigue into submission… I do understand it could take time to take full effect (if it in fact will do so) and maybe keep flares down to a minimum too. It would just be sooo awesome to feel mostly human again 
But yes, fatigue seems to a common theme around here, at least until the correct mix of meds is stumbled on.