Plaquinil, but finger pain?: Had a few weird days... - LUPUS UK

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Plaquinil, but finger pain?

dgleds profile image
34 Replies

Had a few weird days with some funny symptoms, but....Can you be on Plaquinil (hydroxy) and still get pains in your fingers etc?...I actually didn't have pains in my fingers before, but I do now....Ive been on Plaquinil for about a year and half almost,...and high dose vitamin D since this July.

34 Replies
Purpletop profile image
Purpletop

Plaquenil takes the edge off the disease but it doesn't put it into remission or prevent it from flaring, or progressing. Joint pain that you describe suggests that your disease has moved to a new manifestation or that it is flaring. If the symptoms continue for more than few weeks, I'd go to the rheumatologist and see whether additional medication is needed to control the disease long term (an immunosuppressive perhaps) or address the flare (steroids).

dgleds profile image
dgleds in reply to Purpletop

Ya been really tired again...not as crazy tired as in first days, but big sleeps have been happening. Rhumey lives far from me, but I have an appointment December or January...That pain happens when Im stressed or tired mostly...I also was missing my family after a fun visit...Arggg....Ok I thought maybe I was having a bit of a flare, from other strange things going on...Im over medicated on thyroid meds at the Mo too, so might play into it...Few more weeks can check that again...Thanks Purpletop.

misty14 profile image
misty14 in reply to dgleds

Hi Dgleds

You could try to get a cancellation at your Rheumy Clinic if you want to go before Dec/Jan!. Hope you get your flare sorted soon!X

dgleds profile image
dgleds in reply to misty14

Im not as bad today, but I sure feel tired...and even if I rest and sleep lots, I sure LOOK tired...Im seeing a gp next week, see what he thinks....but he is like a student gp, cause I don't have a regular gp anymore...

Thanks Misty14 for writing to me :)

misty14 profile image
misty14 in reply to dgleds

Hi Dgleds

Good luck when you see your GP. Hope you get help for the pain, it alone can make us feel exhausted without a flare!. Maybe you could try changing your GP to a more experienced one?. X

dgleds profile image
dgleds in reply to misty14

No they wont let me have a gp of my own...I had one but she went back to Africa about year and a half ago...No one is taking new patients in my town, so I just have to take who I get....but its all at the same clinic where my records are on computer...But be nice to have a gp you see and know, and feel kind of confident about...

misty14 profile image
misty14 in reply to dgleds

Hi Dgleds

That's tough about having a GP, having to explain every time you see someone different!. A good thought about a student GP is that they should be up- to- date with latest research and thinking!. Let us know how you get on!.X

dgleds profile image
dgleds in reply to misty14

I will...

thanks Misty14.

dgleds profile image
dgleds in reply to misty14

all my tests from my physical are good...I even asked for ferritin and b12, and diabetes...My thyroid isn't over medicated anymore either...Why do I feel and look so tired? I can go for walks, so I have some energy...but tired. Ive been sleeping 8 hours...My hair still pretty thin too...Im on low hydroxychloroquin (my request), and synthroid 112mg every day...no pains right now,..just uber tired feeling....brain fog...maybe its post menopause stuff...have to wait for papp results...

in reply to dgleds

Over-medicated on thyroid meds? Have you tried going easy on that hormone, to see if that makes any difference? Too much T4 circulating?

Sometimes, some of us autoimmune peeps, thyroid hormone would/could act like a burning fire. Time to check your antibodies? Is that Hashi you have? I tend to react to thyroid meds myself though it's so complex and I don't know your situation very well.

dgleds profile image
dgleds in reply to

No they said its been too long to be Hashi's..Ive been hypothyroid like about 17 years...It stabalizes for periods of time, then it goes yo yoing latelty....It might be menopause/post menopause stuff messing it up, but gp never look into that...They say just leave the meds at your old level, maybe it will fix itself and we will check again in 2 months...Last lady gp I had, was chasing my thyroid around with different levels of meds every 3 months...finally she left it alone....was stable about 1 year then off again...

in reply to dgleds

Sounds like it might be worth seeing an endo and get things (thyroid) checked out properly. These things RARELY fix itself. Changing the level of thyroid med so frequently does suggest, your gp should not be entirely relied upon.

I also know that once you got Hashi, which is an autoimmune condition, you got it for life. You may develop new autoimmune conditions as you go but Hashi is not going to disappear whether we like it or not. I got one so I know it's there LOL!

dgleds profile image
dgleds in reply to

Here you cant just ring up an Endo, it has to be the gp's idea..sadly. That gp that chased my thyroid around is not in Canada anymore, and has gone back to south Africa.. They say its not Hashi's....I asked that, and she said no its Hashi's at the beginning maybe, but Ive had thyroid probs for 17 years...Actually on synthroid it was stable for a long time, until either menopause hit, or mild lupus, or both, cause seems to be about same time...Another gp said that's all about they can really do, is monitor it and try different med level...

Calafia profile image
Calafia

Hi dgleds,

That was my experience and it would move to different joints in my fingers every couple of months. I also started experimenting with my food intake and avoid processed foods, sugars, preservatives. I mostly just eat simple meats and veggies and learned to make treats like home made ice cream with coconut milk and cream. Now I don't have those pains and have been able to reduce Plaquenil dosage. It took a long time of clean eating (like 1.5 years), but even within a few days some of my symptoms (like hands feeling like they are on fire) started getting better. Not recommending you reduce your Plaquenil without medical guidance. Was just my experience and food has a profound impact on how I feel.

I do the high dosage of vit D and a super duper probiotic that requires refrigeration. Also, I take a bit of magnesium citrate each night which is reported to help your cells relax and maintain balance.

It's a lot of stuff/regime, but feeling better is worth it for me.

All the best, Calafia

in reply to Calafia

Calafia

I agree food has a lot of influence amongst us.

I pretty much lead a very healthy lifestyle but no, that didn't make any difference. I often read about "try gluten free and you get better" and I disagree. Some of us are gluten free 2-4 decades and still have this condition.

Calafia profile image
Calafia in reply to

Hi Omega!

I couldn't agree more. I originally just tried eliminating gluten and saw no differences.

I started to get relief when I eliminated processed food, preservatives, and sugars (fruit okay, but kept it minimal).

Also the supplements seemed to really help, but I had low Vit D and nutritionist told me as long as that was low I'd have low energy. Do seem to feel better after taking highly absorbable supplement for a couple of months.

Just my journey, but hope it works for others.

Peace and health to you,

Calafia

in reply to Calafia

I never eat any processed food, sugar and am very watchful of any preservatives of any sort since I was much younger. (Geese, this sounds pretty much of OCD!! lol) I agree with fructose, which is considered to be just as bad in excess! I have a tendency to be low in Zinc and I do not tolerate eating nuts, which I get horrible reactions from.

Thanks for suggesting what worked for you, which is very helpful.

Wishing you well and thanks for sharing :)

Calafia profile image
Calafia in reply to

So funny, yes it does seems OCD. Let's just say my contributions are not a hit at potlucks. :)

Thanks for the well wishes and sending some back to you.

dgleds profile image
dgleds

Ok, I eat pretty clean now, but I will look into that too.. Im a chronic worry wart, and I think that's a huge thing messing me up...I need to tweak a few life things, then I bet some things would straighten out too...These things not so easy to tweak, but in new year Im gonna try to tackle them...The pain in my hands when it happens is gross...That's a super yukky kinda pain...bone chilling.. Before it was muscles, stiffness, and some different kind of pain in my knee and hip, and lower thumbs...(my bed doesn't help matters).

Calafia profile image
Calafia in reply to dgleds

Yes, I worry way to much and it only gets worse when people say "don't worry so much"!

Sending a big hug. Find small, simple changes to make and try do something every day that brings a smile to your face if only for a bit. I was so depressed at first and overwhelmed. Lots of tears, not many smiles.

I feel so much better now and can even find reasons to smile again; praying for you to find a path to improvement and to start feeling better.

My pain was mostly muscles, stiffness, and really sharp pain in fingers, wrists, knees. The fingers would happen once a month and I wouldn't not be able to bend one or two until I warmed them up and it was painful. I would also lose function of my elbow about 10 days before my fingers went haywire. Now all of that has quieted down but it was severe at first.

dgleds profile image
dgleds in reply to Calafia

sounds very similar to me...

Dam stress...darn hormones etc...

Thanks Calafia :)

Calafia profile image
Calafia in reply to dgleds

Yes, the rhumy dr looked at me like I needed to be committed when I asked if I should get a hysterectomy since some of my issues seemed to be hormone related. Glad I could do my part to make her day interesting. :)

Have a great week!

dgleds profile image
dgleds in reply to Calafia

Never mind, you know your body better than she does...(it was a thought, and idea that you were exploring)..The gp don't know everything...

You have a great week too Calafia.. :)

Wendy39 profile image
Wendy39

Hello Dgleds. I can relate to what you are saying. I was diagnosed in November last year with SCLE and was prescribed 400mg hydroxychloroquine sulphate a day. Although my symptoms have improved I still have lingering issues. At my appointment with my Rheumatologist in July, she confirmed the SCLE, with background hyper-mobility and osteoarthritis of the hips and also diagnosed mild bilateral DeQuervain's Tenosynovitis (a form of tendonitis in both wrists). I was also prescribed iron tablets for border line aneamia and this has helped my fatigue and energy levels. She did however suggest that I needed to reduce my medication, I persuaded her that I needed the full dose a little longer and she agreed to let me take the 400mg until October, at the end of the summer period, as I didn't know how bad the photo-sensitivity would be. So I have now reduced my medication to 200mg one day and 400mg the next. However the tendon problem has not got better. I could cry with the pain sometimes. I have bought supports to wear and have had to take pain relief for the symptoms. The pain can be in my fingers, or up my arms, it can be a dull, nagging pain or shooting pains from fingers to elbow. It's horrible. Plus my hips have been terrible this week. I have taken daily pain relief for those symptoms for the past 5 days. My gut instinct is that my tendon problem and my osteoarthritis are all related to the lupus. But no doctor so far will make that link. I also think that rather than reducing the hydroxychloroquine I need the full dose or other medication to get this all under control. But then I am no expert, I might be proved wrong. But the whole situation is very frightening. I have just turned 40 and have 3 children, aged 10,9 and 6. The thought of my health slipping any further backwards is frightening. And it's all in someones else's hands. It all seems like trial and error. I wonder whether I need to be more forceful at these appointments. Do they take my symptoms seriously? I think my pain threshold is quite good, I gave birth to 3 children with just gas and air. So I don't make a fuss. Maybe I should? I see my orthopaedic surgeon at the end of October and am hoping it will be a helpful appointment and hope that I am not disappointed. When is your next Consultant appointment? I hope the pain in your fingers goes soon. Wendy

in reply to Wendy39

"my osteoarthritis are all related to the lupus. But no doctor so far will make that link"

I agree with you. I agree that osteoarthritis is generally considered as wear and tear (it's an age thing) but I feel the same as you.

" I see my orthopaedic surgeon at the end of October and am hoping it will be a helpful appointment and hope that I am not disappointed. When is your next Consultant appointment? I hope the pain in your fingers goes soon."

Fingers are pretty well targetted by Lupus. Mother had deformed toe / fingers by the time she was Sixty years old (and her standard of healthy lifestyle is extremely high, eating well, selective nutrition, exercise etc). I had hands problems since many years. Yes, pain in fingers is totally ghastly!

It's funny some of us are going through something similar. I'm scheduled to see an orthopaedic consultant soonish. I'm seeing one for my neck. Good luck with your appointment!

dgleds profile image
dgleds in reply to

neck..thats one of my spots....well mostly collarbone area...Rhumey says, "That's not lupus"! Ok, well what is it then?

in reply to dgleds

Well, it sounds to me that the Rhuymy is just repeating what he read in his medical books. Doctors learn a great deal from his patients, in fact, a lot of REAL education comes from his own Patients after a while.

dgleds profile image
dgleds in reply to

no doubt...

dgleds profile image
dgleds in reply to Wendy39

Well I hate meds...and I asked them to be reduced a couple times...he didn't remember the last time(the Rhumey, I mean)...He said ok we will do it, but its pretty low...so....likely I will have to up the plaquinil..I don't take steroids. I hate having to take thyroid pills, and lupus pills....I know, I know...I have to find a happy medium Im ok with...I saw my Mom take so many pills with her heart probs.....I understand people need them.

I don't even have a GP of my own, due to gp shortages here in western Canada...(kinda scary)...You rarely see same gp twice...

It was an Orthopedic surgeon that pulled the most strings for me.. He was the guy that got me to a Rhumetologist...Not the favorite Rhumetologist, cause they are booked solid, but he got me in to someone...My next appointment I think is early January...Thanks Wendy:) 40 is when my thyroid thing started....

dgleds profile image
dgleds in reply to Wendy39

Well I have not been to the Rhumey yet, that comes later in January...BUT, I had my yearly physical and everything is looking good...I asked for the extras: B12 check, cholesterol, diabetes, ferratin ...all are ok! My heart and lungs are good, and my thyroid has inched back to normaler,..it was over medicated a bit TSH showed that...everything is fine, and im glad :) I still feel tired though, so must be something else....At least things are balancing out it seems....So not thyroid...so maybe post menopause stuff, or lupus stuff...

I often wondered if patients or the underlying disease process may develop tolerance on Plaquenil like breakout symptoms as you have been on the drug over some time? Any idea?

dgleds profile image
dgleds in reply to

I have only been on it just over a year ,like a year and 4 months to be exact...

dgleds,

That's for a long time to be on Plaquenil and having breakout symptoms. That often means you would need something else on top of Plaquenil. As peeps often say, Plaquenil itself rarely controls all the Rheumatic symptoms. I'm on steroid as well as Plaquenil (400). No matter how effective Plaquenil is to me, Plaquenil didn't control the disease flare-up, entirely.

Hope you get something sorted out soon. In the meantime, sending you warm wishes!

dgleds profile image
dgleds in reply to

ya, but I started at 400mg plaquinil and had side effects, so quickly went down to 200mg,...then I told Rhumey I was going to try for 100mg every day(which he said was very low dose)...If it keeps up, Im thinking he will say."I told you so"...Likely I have to up my plaquinil...So the drug may have built up in my system, but likely the levels have gone down because I only take 100mg a day...Nope, no steroids for me unless Im in a super duper bad way...I had a horrible experience with those!

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