Joint pains and tingling sensation in... - Hughes Syndrome -...

Hughes Syndrome - APS Support

9,843 members10,019 posts

Joint pains and tingling sensation in hands and feet.

Apsinthehouse profile image

Hello to everyone, I am revisiting the issue of joint pains. I have been experiencing joint pains in both hands, both feet and hips as well for the past year or so. In addition tingling sensation in hands and feet. Have been put on 400mg of planquenil 6 months ago. I do notice improvement in terms of less fatigue and the joint pains are starting to decrease. Would be happy to hear about more stories of ppl with joint pains, fatigue and the effect of Planquenil on both? Just as some background, have been diagnosed with APS 14 years ago due to a DVT and PE and on warfarin ever since.

36 Replies
lupus-support1 profile image
lupus-support1Administrator

How do you know it’s related to APA/Hughes Syndrome? Did your doctor make a diagnosis?

If not, I would pursue getting a diagnosis.

With good wishes,

Ros

Have done blood tests and the rheumatologist determined it’s related. He prescribed the medication. He also determined that in addition to aps I have borderline lupus. I am ANA positive plus ds dna slightly elevated.

lupus-support1 profile image
lupus-support1Administrator in reply to Apsinthehouse

This is what I was getting at ie SLE or a lupus variant hence the Plaquenil. It can take a while for the Plaquenil (hydroxychloroquine) to kick in. Please monitor any new symptoms in a diary, which will help your rheumatologist.

Be well!

Ros

Also would like to ask, how long does it usually take for the planquenil to work for the joint pains ?I do notice a different as I am taking them for about 4 months now. What is the success rate for them? Do the pains go away all together or they just reduce the pains ?

And thank you so much for the kind replays

lupus-support1 profile image
lupus-support1Administrator in reply to Apsinthehouse

About 3 months but can continue improving.

Did your doctor refer you to an ophthalmologist? It is rare & only if you are taking Plaquenil for many, many years, there is a small risk of eye toxicity.

PLEASE DO NOT PANIC OR WORRY because Plaquenil is a safe drug.

Nevertheless see an ophthalmologist annually! If you do, there will have a baseline so if you haven’t seen an ophthalmologist, get a referral.

I have been on Plaquenil for over 20 years & no toxicity. If found stopping Plaquenil is the answer.

Please be aware I am not a medical doctor. Always see your doctor for advice.

With good wishes,

Ros

Thank you much for the quick and informed responses. 🙏🏻

What was the reason you were give planquenil in the first place ? Was it joint pains ? Are aps plus SLE?

lupus-support1 profile image
lupus-support1Administrator in reply to Apsinthehouse

I have SLE & Hughes (APS). Plaquenil is a standard SLE drug & given to patients.

Thanks for the answer. I have another question. As I have been diagnosed with aps a while ago and the joint pains are relatively new 18 months or so. Would the Positive ANA at 1:320 plus a mildly elevated anti ds DNA coupled with the joint pains (no swelling or tenderness) qualify as mild lupus ? From the info available on line (research/books etc), it seems that some Aps patients get Positve ANA 20-40 pct, some get mildly elevated anti dna and joint pain is common up to 40%. How should understand it ?

lupus-support1 profile image
lupus-support1Administrator in reply to Apsinthehouse

I don't think I can answer your question because I am not a medical doctor. You seem pretty informed and you ask the right questions. You also know, in fact you are, an expert on your own body.

It's very difficult - impossible - to know what belongs to which bit!

My answer would be: treat the symptoms to alleviate them in the patient & ask your rheumatologist!

Just to add, not all rheumatologists are experts in SLE. Some never see SLE patients or don't know how to diagnose it. There have been many cases where patients have had to wait 20 years to be taken seriously, often they have been diagnosed with "all in the mind." APS/Hughes has been rejected by some doctors!

If you trust your doctor, that is the most important part.

With good wishes,

Ros

Thank you for your informed answers 🙏🏻 Wishing you all the best 🙏🏻

He basically said that once I am ANA positive have joint involvement and the ds dna elevated slightly it points to a light version of Lupus.

lupus-support1 profile image
lupus-support1Administrator in reply to Apsinthehouse

May patients do NOT have a positive ANA or ds dNA! I am one & diagnosed by Dr Graham Hughes after 18 months of "watch & wait".

There are many lupus variants. I have SLE with dermatomyositis.

What he is describing is classic SLE ie malar rash, lupus nephritis & positive DNA.

Plaquenil is the standard treatment and many patients do very well on Plaquenil and don't require any other treatment.

Your doctor is right to TREAT your symptoms & not to give a diagnosis until he is certain. Giving a wrong diagnosis is devastating to a patient. However, there are many patients without a positive ANA & there are healthy adults with a positive ANA. As I said, there are patients without a positive ANA & ds dNA.

It's complicated!

Before your next appointment, have a list of questions you want to ask.

I would also advise you keep a symptoms diary, noting down anything you experience.

You should also write down all your illnesses from childhood, no matter how disconnected they appear. Include depression, anxiety etc.

Be well!

Ros

MaryF profile image
MaryFAdministrator

Hi, we say this a lot on here, but please make sure your levels of vitamin D, Folate, Ferritin and your Thyroid is closely looked at. Some of us order our own tests if this is not done, more detailed tests. Both Thyroid dysfunction and low levels of Vitamin B12 affect the circulation and can make things worse so best really to rule that out also. I enclose this useful paper. the-rheumatologist.org/arti... I was far worse until I sorted my Thyroid and also my B12 levels. MaryF

What's your therapeutic range for Warfarin? I've found that my pain (and fatigue) is a lot better with a higher INR. My Rheumatologist didn't put me on hydroxychloroquine because I suffer from psoriasis and he said it's been known to make psoriasis much much worse. My target INR range is 3-4 officially but he's fine with me being 3.5-4.5. The lower my INR, the more symptoms I suffer from - aches, pains, fatigue and slurred speech.

Thank you very much, for your detailed response. Could pls share what type of pains you experience? Are they joint pains ? If so, what joints ? At time of day do you get the fatigue ? Are you diagnosed with APS only ? Lupus as well?

Lure2 profile image
Lure2 in reply to Apsinthehouse

Yes, I would also know what therapeutic range of Warfarin you are put on?

If INR is too low we do not get rid of our typical APS-symptoms like tingling, pains and aches etc. I need an INR of 4.0 and I selftest to keep it there because I want to feel ok with my APS. We have too sticky blood and must thin it to feel ok. At least if we have a correct diagnose.

Initially it was joint pains, but now a combination of joints and general aching of the limbs. My feet really seem to suffer. Mid afternoon is worse for fatigue but during a flare it will last most/all of the day. I do make a conscious effort to exercise, which absolutely has helped with the aches and fatigue and also helps me to rest better/sleep more deeply. I did have a bone scan but that was when I was under a really awful rheumatologist so I’m not actually sure what the scan showed. I have APS and although I have many Lupus symptoms, I don’t have Lupus. I had a DVT, then CVST and Stroke. I was out on Warfarin and I’ve had no further clots since.

Thanks for the answer. Seems to be very similar to what I am experiencing. Joint pains, fatigue etc. Fatigue worst between noon to after noon and then the joint pains also increase. Sports help me much with the fatigue and the pains. It also seems for me that I am between aps and light lupus for now. Are you ANA position ? And are you single, double or triple positive APS?

How long after APS diagnosis did the joint start to hurt ? Which joint are the painful ones ?

Hello there, fellow APS , I was Dx in 2009 with APS having had a stroke @29,30.I have been on warfarin ever since.

In 2018, I was put on life support because I developed CAPS. I was given a 43 percent of survival. During all of this, I was still taking warfarin.

My hematologist, is still in awe that I'm, still alive. I am concerned about the tingling in your hands, feet.

I was put on plaquenal, and I was a HOT MESS. That med made me seriously confused.

You need to see a hrematologist, for your arthritis. I take Gabapentin for my tingles.

Thank you for the reply. What is the cause of the tingling ? And to your knowledge is it related to the joint pains ?

Well, I know that the tingling sensation, is niermeral pathic.Sorry, stupid spell check.

Have you talked to your MD about this? R U diabetic. If you are diabetic, you need to see your MD!

I am not diabetic. And have been to the neurologist, was tested for neuropathy and all came out ok. The rheumatologist said that it happens with APS together or independent of the joint pains and fatigue. I also saw on the APS page of the NHS that tingling sensation is well know when there is APS.

My Medical team, has Rx gabapentin. I take 900 mg @night.This med is for parkingtins disease, but as we all know meds can treat other issues.

Sorry, I am a retired ICU and Cardiac Nurse. So sometimes I speak Nurse.

Hi APS. I would make sure you don’t have SLE on top of APS. Although not super common for APS to be followed by a SLE diagnosis (something like 10-15% over 10 yrs), it happens.

I am SLE and persistent aPL but not APS. I get joint pains like the dickens and my back is jacked up. I have severe DDD and arthritis in my lumbar spine. I am only 37. Plaquenil helped with knee, elbow, wrist, ankle joint pain but not so much with my back. If I go off of it, my joints throb all over. I also get tingling of the hands and feet…. Peripheral neuropathy with paresthesias. Id imagine this is common in APS.

I’d just make sure this isn’t lupus causing your symptoms. They may want to send of a dsDNA or ANA to start. (Just saw you are mildly positive so you probably do have SLE on top of APS). Plaquenil will take months to work. Sometimes rheum will “bridge” you to Plaquenil with steroids if you’re symptoms are super active. Should you feel so awful you can’t function, let rheum know.

Sending healing vibes and hugs. ❤️xx

Thanks fir the detailed answer. I am ANA positive at 1:320 for several years. My previous ds dna came back negative and this time around the ELISA came back weak positive and CLIF came back negative for ds dna. I have been diagnosed with APS 13 years ago but recently the rheumatologist said that I also have a light version of Lupus after the latest blood tests

I updated my response after I read your responses below to Ros. Sorry. I’m the worst when it comes to editing.

Hope you find relief soon. Let your rheum know if it’s unbearable. They can give you something for immediate relief while Plaquenil kicks in.

Thank you so much for sharing 🙏🏻

Hi, I also have APS and lots of joint pain but… two days ago as joint pain was getting worse and worse I realized I had quit vitamin D thinking I was getting plenty of sun. Sun is not enough for me. I am back on the D with some relief and hope the relief grows as it builds back up in my system. It is an easy thing to try anyway

Apsinthehouse profile image
Apsinthehouse in reply to Esolt

I’ll get some tests done to see where I stand with the vitamin D issue. Thanks 🙏🏻

Apsinthehouse profile image
Apsinthehouse in reply to Esolt

Which joint are painful ? Are they worst in the mornings ? Or throughout the day ?how long after being diagnosed did they start hurting ?

Esolt profile image
Esolt in reply to Apsinthehouse

Oh I had many years of pain and fatigue and was finally diagnosed after losing the 4th baby. Pain started in my knees as a teen and now can be in any joint at any time. Excessive helps. I can be totally sore and difficult to walk but force myself to walk in my neighborhood and a mile away, I find relief. My doc says suspects it is about blood pooling too much with APS and needing to force it to move. She is GP, not specialist, but my rheumatologist also declares movement will save us. It has been a long time since I participated in this site. Glad we have each other

Apsinthehouse profile image
Apsinthehouse in reply to Esolt

This site is certainly great. And I appreciate being open about your experience. I have been diagnosed about 13 years ago. The joint pains started about 18-24 months ago. The fatigue existed but I didn’t pay much attention to it, until couple years ago when the fatigue during the day is severe on some of the days. I did find the planquenil to make a difference. As for the specific joint I feel them mainly in the hands and feet. Getting up from bed and taking the first 20-30 steps in a real pain 😇

Esolt profile image
Esolt in reply to Apsinthehouse

Exactly! Mornings can be very sore. It used to be my ankles more and those first steps were hard, right now it is in my shoulders more. I don't know if it moves around on all of us? Or maybe I am walking enough to help the ankles but not doing upper body arm movements enough? Maybe I will try that more. Thank you for getting me thinking about it.

Apsinthehouse profile image
Apsinthehouse in reply to Esolt

Thank you much sharing 🙏🏻

You may also like...