is overdose of plaquenil possible?

Allergies, blood and immune system
1

My SS has come flared up with a vengenance...swollen fingers, wrists, knees, severve tendonitis from shoulder to elbow, cant put weight on elbows, cant lift arms over my head or straight in front of me,  tendons on my palms are now now like lumps under my skin...very painful, so i acnt do normal things like open a bottle, or open a door by turning handle, eyes feeling like a i have something in them so cant open it without pain (this comes and goes but the tendons and joints and muscle pains are constant) wake up in incredible pain and stiffness. anyway went to rheum back on plaquenil 200mg morning and at night plus celebrex and solpadeine as painkillers... over a week later was still much the same so decided yesterday to double my plaquenil from 200 to 400 twice a day..i didnt go back to rheum..

​would this be considered as overdose.? no side effects a bit except sleepy (a problem as i work) but then SS fatigues me. tired the net and all i got was 400 mg once day for treatment. the 400 has helped my fingers a bit ...less swelling and less pain but still feel very stiff.

​the rheum had told me that he could give me something stronger if 200 twice a day didnt help. (he didnt say anything about doubling the dose)

​my follow up is in 2 months time.

​are there any other meds i could try which could be more effective? i currently live in the Middle East so maybe wont be able to get everythnig .

what is everybody else on ?

​this flare started in december but has got progressively worse.  

​any ideas /suggestions?

​Someone who has arthritis said dont eat watermelons and cucumbers.

2

Hi 3Shaq,

So sorry to hear about all your pain and symptoms. Sometimes flare ups can be caused by toxins in your environment, stress, lack of sleep, or diet. Something that causes flare ups for me is if I eat foods I know I'm sensitive to ( pineapple, white sugar, dairy, etc.). These are things that I'm sensitive to, yours might be completely different. I feel that I'm continually learning about autoimmune disease and ways to treat it naturally. I chose this route because there are no side effects (and you can implement the natural route along with the medicinal route)-- if your symptoms improve, you can maybe even drop the meds under the guidance of your doctor. I also try to monitor what I can in my environment, which is not always possible because that's just life-threatening but I get rid of as many chemicals as I can. Are you using eye drops for your eyes? I use natural eye drops as needed. Sorry I can't give you better advice about the medicine, but I do hope you find relief soon.

3

Hi Shaq,

I can really sympathise with the problems of tendon pain. I had a bad attack a year or so ago, which affected my right elbow and left thumb. Like you, I was completely disabled for a few months, and had to find all kinds of ways around doing normal household tasks (including asking for help from my neighbours on occasion). I'd already retired from paid employment by this time, so I can only imagine what it must be like to have to go out to work every day in this state. It subsided spontaneously after about six months, leaving just the usual tendon pains in both upper arms and an occasional stab in my right elbow. It has, however, started to affect my left leg now, but not to a degree where it's disabling.

I believe the watermelon story is true. I do occasionally indulge, though I invariably find it a bit of a disappointment (like coffee!) However, I don't eat it often enough to notice any ill-effects. I haven't personally heard anything bad about cucumber, but then again that's something I rarely eat. I don't enjoy the taste or texture of what I perceive as "watery" fruit and veg - including marrows and courgettes.

I had an attack of RA (not tendinitis) that came out of nowhere in my mid-30s, for which I consulted a homeopathic rheumatologist. As well as prescribing various remedies, he went through my diet with me. The one complete no-no that emerged was rhubarb. I'd always loved the stuff, and was in the habit of cooking a large bunch every week throughout its long season here (about Feb-Oct). I'd keep it in the fridge and have a serving every day for breakfast. He told me that was the worst possible thing to eat for arthritis, as the traces of oxalic acid in the stems mimicked uric acid in the body, and said I should never touch it again. I was eating a near-vegan diet in those days, and heavily dependent on pulses (chick peas, lentils, beans etc.) He told me to cut those down to just once a week, as they contained a lot of purines. Ditto for chocolate and coffee, both of which I consumed quite a lot of in those days. (Interestingly, I became less interested in chocolate and almost totally lost my taste for coffee after the menopause.)

I can only say that the RA (which had been completely disabling, to the extent of having to take a couple of weeks off work) disappeared after about six months, and has never really come back in the intervening 25+ years, apart from the occasional twinge. About once every two years I crack, and buy a bunch of rhubarb. Sooo delicious cooked dry, on slow heat in the oven, with dark-brown cassonade or honey to sweeten it, and some grated ginger! But I always suffer as a result. My joints start aching and my ever-present background tendinitis invariably goes into a flare-up.

Perhaps you should take a look at what you're eating, to see whether there's any correlation with the tendon pain? I've never taken plaquenil but I know a little about it, and I'd be afraid to overdose in case it had an adverse (and irreversible) effect on my eyes. Could you perhaps arrange a short telephone conversation with your rheumatologist and ask him about this?

I hope you'll soon be feeling better.

4

Hi Lily

What's the watermelon story, and how does it relate to the vast squash family, as in, watermelons are high hlycemic but cantaloupe are not.

5

I don't know. It's just something I keep stumbling across on line. I haven't actively researched it because it's not something that applies to me personally.

Is watermelon a member of the squash family? I didn't think it was, though I believe cucumber is. My remark about similarities only referred to the texture of all these, which I find similar, and dislike.

6

Hi aitarg,

As a rider to my earlier post, I've just spent 5 minutes researching watermelon and RA. When you get further into it, it emerges that most sites recommend it as an arthritis-fighting food, ditto cucumbers. I'm still not going to start eating either though - yuk!

Advice on rhubarb seems to go both ways, but with the majority saying it's actually good for RA. Well, not in my case. I'll get my anthocyanins elsewhere, thank you!

There are all kinds of controversies of this kind. At the time I was seeing the homeopathic rheumy, a friend who'd seen a conventional rheumy had been told to avoid oranges and dairy, especially hard cheeses, at all costs. When I asked my rheumy about this he nearly exploded (he was a fiery old gent) and said these were just the things I should have been eating plenty of!

I think it all boils down, as usual, to figuring out what foods suit us as individuals. There as many variations in metabolism as there are people. As the old adage has it: "One man's meat is another man's poison".

7

hi

​i have plugs in my eyes to prevent tear loss.  I will have to monitor what foods causes flare ups and i do eat a lot of different nuts (almonds, cahews,pecan,brazils,macedemia) but haveeaten them for years without problems ..perhaps now i am reacting to them now. environmental polution is heavy in this part of the world so maybe i am recting to that now. i will be more aware now esp of my diet

8

hi..luckily i dont like rhubarb

​ My SS is primary but maybe the RA rules hold. I saw an opthamologist and he said retina is affected after a long time on plaqeunil and ahigh dosage and 400 a day was not that high.but as i am now on 800 a day maybe i need a re think.

​becoz i work and have to drive there my finger joints are in contant pain the whole drive the (45 mins to 1 hr) and i have to use both my hands to to put car in gear (autmotic gear box) and use both hands for handbrake off and on and use a back of a butter knife to open my seatbelt.

​i also use copius amount of those gels for inflamation like voltaren and fastum....they do help for a short period of time then have to re apply.

​when this current attack 1st started in december it started with cute sharp pains in my  ribs...Dr.  put it down to intercoastal neuralgia, this was followed a week later by shoulders, collar bones, neck.etc etc eventaully down to wrists,fingers,ankles.

​I do love watermelon  and eat some cucumbers.....so maybe eliminate those for a while and see . As i also have GERD, esphogitis,gastritis, Barretts esophagus and trigger foods for that i dont eat a lot of cheese or fried or fatty foods. i also have osteoporosis so cucumbers were 1 of the good things to eat.  the gastroenterlogist has said that my 'stomach problems' and SS maybe related.

​​My 1st attack of SS was very mild and went after couple of months. this attack is pregresively getting worse. (today 1 ear feels i have an insect crawling around inside)

anyway i will now monitor food with attacks and hopefully will be able to manage

9

One small point jumped out at me from your post, shaq. The copious use of Voltaren (diclofenac), combined with your gastritis. I'm sure you know about this already, but I still thought it might be useful to point out that Voltaren is a powerful gastric irritant, especially when used long-term. Obviously it's much less irritating when used as a topical gel, but it's known that even the small amounts absorbed systemically from heavy topical use can actually cause gastric irritation.

I'm glad to hear your first attack of SS went into remission. This makes me think (from personal experience) that the current one may well do the same, even if it takes longer.

10

Thanks lily..but at this stage i am desperate for relief from the contant pain and at work i have to use keyboard and mouse...and i guess i have got so used to my stomach issues now that they seem to have paled into insignificance...copmared to this SS attack...which has been ongoing since december....involving more and tendons and joints...

​but as you say it migght just disappear   almost overnight as the 1st time 

11

Hmm... well, it probably won't disappear overnight. I have experienced that one, though - with peripheral neuropathy in my big toe. It was very severe, went on for 10 years, and in the last year or so my doctor had proved through blind blunt/sharp tests that there was no sensation left in the toe. (She put this down to "old age" too.) And still it disappeared overnight - which shouldn't even be possible!

However, I have to say - again from personal experience, so others might disagree - that the longer you've had SS, the longer the flare-ups and the shorter the remissions tend to be.

But don't get too downhearted. I was in a very similar position to you with my tendon flare-up a couple of years ago, and though it hasn't gone into full remission, it's certainly much more manageable now. I had to smile at your description of having to undo your seatbelt with the back of a butter knife (though I understand these things aren't funny at the time). I don't drive as I'm fortunate enough to live in a city which has excellent public transport, but I can remember having to work out strange ways to carry out normal household tasks. The nutcrackers came in very handy for all kinds of unexpected purposes!

Incidentally, I've just noticed while typing this that one of the pop-up ads down the right-hand side of my screen says "5 Worst Arthritis Foods" and shows a watermelon carved like a Halloween pumpkin with an unhappy face! Maybe that's where my idea about watermelons being bad came from, albeit subliminally. I have no intention of clicking on it to run the video, as I know from experience that I'll just be condemning myself to an endless drone by an irritating voice, eventually leading - after about half an hour - to an attempt to sell me something I don't want, and without once mentioning watermelon!

12

Hi Shaq,

I just wanted to point out that your stomach symptoms are a red flag to the source of your problems. I used to have many stomach issues, and what I had to do was heal the lining of my stomach. After I did that, many of my problems disappeared. Although maybe it could be attributed to my change in lifestyle (diet, elimination of toxins, managing sleep and stress)-- however, things that were commonplace for me are now rare such as, acid reflux, cankers, bloated stomach, constipation, diarrhea. About the watermelon and cucumber--i eat both without problems. I did have a blood test done with which tested over a hundred foods to show which ones I was most sensitive to. It was quiet revealing and the most common culprits, like dairy, wheat, corn, sugar, etc were included. What I'm trying to say is that there might be foods that you are sensitive that are unique to you. There are also ways to test this at home, but it takes time. The other test takes money.

13

Thanks, Lily, and yes, watermelon are in the squash family. Tho I love them [hey! I'm a Southerner!], I mostly avoid them now due to the glycemic issue and wanting to get completely out of pre-diabetes. My childhood would have been sad without the joys of watermelon in summer - and sans seed-spitting contests. I wanted to make sure that cantaloupe were okay, plus pickling & English cukes.

I shall enjoy these lovely squash fruits from the New World and you may enjoy all that (shudder, gag) fish!

14

Shaq, my apologies for hijacking your query to find out about foods Lily mentioned.

I wish I had some advice on the plaquenil. Will keep you in my prayers.

Aitarg

15

Mmmm... fish, lovely fish! (I sound a bit like Gollum, don't I?)

16

Down, Lily, down!😉

17

Actually, you can still get the omega 3 benefits of oily fish from fish oil capsules. No need to eat the stuff!

18

oh no...remission will start getting shorter ???

​i found all this videos sell something in the end,no matter how innocous they sound. 

​another poster who is a RN answered my double dosing on plaquenil in a new discussion and she said i am leading my self into kidney damage ...i had not even considered this aspect ...so back to my prescribed dose of 400mg a day...and rhuen has advised me that i shouldnt stop it for at least 2 yrs.....(when in remssion have to wait a year and see if no flareups while still taking 400mg a day I can then lower it to 200. Have to wait another year and if still in remission i can stop altogether). He seems to think that becoz i stopped taking after a few months when in remission the flare up was stronger 16 months later. Also gave me lyrica for neuropathic pain.

​becoz i am now losing my flexibilty i am forcing myself to ride the pain and use my finger and shoulders and wrists and neck to do things....

​i intend to start using very small weights (only 0.5 ) in each hand and do some uper body excercises while i walk briskly on treadmill...well thats my thinking BUT i dont know if i will be able to do it ...i cant even get out of bed at the moment without a struggle....never mind getting on the treadmill at 5.45 am....i am putting it down to the solpedine i take at night...at the moment i feel as though i am 105 yrs old and not 65

​i will now stop the whineing.      

19

info on foods is always good to know

​i just bought some omega 3,6 capsules from new zealand and only when i got home i realised they are from plants....are they still as beneficial for the eyes as fish oils ???

20

apparently if you have SS there is a risk you will have GERD ....(told to me by rheum and gastro recently as i hadnt been diagnosed with SS when i went to gastro to discover all the stomach issues...)

​As i have never had heart burn i can cope with reflux ...( the main sympton is severe chest pain radiating to the back, inability to burp ...feeling as though gas  is trapped which needs to get out...so i take enos fruitsalts which is fizzy sodiun bicarbonate and burp away)

​not sure what the effects of chronic gastritis are...i get the odd stomach pains after eating which subside after some time (anything from 30 mins to couple of hours) i suppose i have got so used to this (had stomach issues as a child) that it doesnt really bother me and doesnt stop me from eating out ...i just limit the quantities i eat now.

​