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Foot Pain


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Old 04-21-2017, 06:07 PM   #1
ccc073
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Foot Pain

Last year I was diagnosed with Lupus. My symptoms were anemia, joint pain and swelling, along with positive ANA, RNP, SCL70 and Anti-Smit.h. After taking 200Mg of Plaquenil and Relafen, my feet have started to swell and hurt. It feels like I have severe bruising on my feet. It started when I overdid on vacation and was on my feet a long time for a week. But 2 months later it is still an everyday thing. The Rheumy wants me to start methotrexate. I really don't want to. He is going to do an ultrasound of my hands next month because the swelling is creeping up from my knuckles to my wrist. I couldn't take 400mg of Plaquenil last year because my hair fell out. But I started trying to get to 400mg again last month. I hope it works, I don't want to take methotrexate.

My question, do you have problems with your feet? They swell up and go down all day. Most of the time they are just really soar, but sometime they burn.


CCC

 
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Old 04-27-2017, 04:48 AM   #2
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Re: Foot Pain

Hi. My feet often feel like I have nails pounded into my soles when the barometer is dropping in advance of a weather front. As for swelling, mine used to be bad but now is pretty rare (I watch my salt intake, for one thing).

Re Relafen, I saw that swelling in hands & feet is a somewhat common side effect, so you could ask about that. Also confirm with your rheum that your kidney function values are OK, since edema is one possible sign of kidney impairment.

But given what you wrote about your symptoms & your rheum wanting ultrasound, I'm also wondering about the possibility of erosive bone damage. Some people with lupus also have RA, and a small percent of people with "just" lupus actually get *erosive* bone damage. So in your shoes, I'd accept any & all tests the rheum suggests running.

I hope others will add more. Please keep us posted on what happens next, OK? Wishing you good luck!

Last edited by VeeJ; 04-27-2017 at 04:53 AM. Reason: added questions about Relafen

 
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Old 04-27-2017, 06:27 PM   #3
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Re: Foot Pain

Thanks for the info. My Rheumy check kidney function and it is good. My ankles don't swell just my feet. The pain is better since starting to take 400mg of plaquenil daily. Anxious to see what the ultrasound shows.

CCC

 
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Old 04-28-2017, 02:23 AM   #4
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Re: Foot Pain

Good morning. Did your rheum mention that Plaquenil is slow-building and can take upwards of 4-6 months to reach its full effect? In other words, don't despair if things don't turn around 100% immediately, as gradual improvement may be more likely.

Good luck with ultrasound! Let us know how it goes.

 
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Old 04-28-2017, 07:58 AM   #5
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Re: Foot Pain

He did. I have been on 200 for a year and started 400 for a month, it seems to be helping already.

 
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Old 05-28-2017, 07:06 PM   #6
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Re: Foot Pain

I had another appointment with doctor. He explained the benefit of methotrexate outweigh the risk. He said the inflammation can effect your heart and other organs in the same way it affects your joints. I agreed to start taking it. My father took it for years for his RA. I haven't gotten the results on the ultrasound on my hands. My feet are about the same. My husband doesn't believe I have lupus even though the doctor said an Anti-SM test as high as mine wouldn't be possible for any person without lupus. He just says 'Suck it up'.

CCC

 
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Old 05-29-2017, 04:40 AM   #7
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Re: Foot Pain

I'm awfully sorry that your husband seems to be rejecting standard medical knowledge, because lupus sadly can go way beyond "just pain" if left uncontrolled. Does he understand that if lupus is left uncontrolled, it can literally wreck major organs?

My understanding about strongly positive anti-Smith is exactly as your doctor said: seen only in lupus. (It's actually one of the very few "no-brainers" in dx'ing this disease.)

After I was dx'ed, I had "helpful" friends try to talk me into taking herbal substances to "boost my immune system". Well, that suggestion made me hit the roof. Unless someone understands the basic mechanics of lupus and the other AI's---that the immune system is mistakenly attacking one's own body and that "boosting" it could accelerate the disease process---they may mistakenly think it can be "knocked out" with common antibiotics, or by boosting one's immune response, or by some magic substance touted on a cable channel---which is all nonsense, of course. AUTOIMMUNITY IS A DIFFERENT DISEASE MODEL, period. Lupus is NOT a virus, NOT an infection, and NOT just pain.

Have you tried showing your husband some very simple brochure, like you could get from one of the foundations, or even a very basic library book? Or asking your husband to accompany you to a checkup? My heart goes out, it really does. Sending hugs.

P.S. You do have US here, and we're here for you whenever you want to talk. More hugs!

Last edited by VeeJ; 05-29-2017 at 04:42 AM. Reason: added P.S.

 
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Old 05-29-2017, 04:34 PM   #8
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Re: Foot Pain

I may ask him to go to an appointment with me. I also have a sister who thinks herbal remedies are great. The doctor told me about a study in New York where they sampled herbal remedies from local retailers, 75% of them didn't include what they were supposed to and they also included mercury, arsenic, and other toxic chemicals. I'm waiting on the ultrasound of my hands. I hope he doesn't add RA to the diagnosis.

CCC

 
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Old 05-30-2017, 04:26 AM   #9
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Re: Foot Pain

Good morning. Your posts made think back to my own dx and how it affected (and puzzled) others. I realized that when lupus went onto the radar for me, I myself had to read library books to grasp the basics. Others may *think* they understand what lupus is, even though they're way, way off, not even close!

In your shoes I'd probably aim for very basic, like a simple brochure written in very plain English, something that also conveys what lupus isn't.

I think your doctor is wise to look into the possibility of RA. (But I sure hope you don't get that dx also!) We'll watch for your updates. Hang tough. HUGS!

 
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Old 07-08-2017, 08:44 AM   #10
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Re: Foot Pain

Just an update. I have been taking 400mg of plaquenil and 7.5 of methotrexate. He raised my methotrexate to 15mg and left the plaquenil at 400mg. He didn't mention the RA, great. But he said the ultrasound of my hands showed not extreme swelling, but very significant swelling. I go back in 8 weeks. And so it goes....

CCC

 
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Old 07-08-2017, 12:15 PM   #11
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Re: Foot Pain

CCC, re swelling, you said it started AFTER you started Plaq & Relafen, correct? Are you still taking the Relafen? I'm curious because swelling is definitely listed as a common side effect for it.

But of course, even if you are still on Relafen, it might have nothing to do with your swelling. I've read that puffy hands are very common in *anti-RNP* patients, so maybe it's that AB that's behind the swelling? You could ask your rheum to speak to that. In other words, you could have some overlap going on, spanning lupus (your anti-Sm) and Mixed Connective Tissue Disease (anti-RNP is always seen in it & can also be seen in lupus).

Also, if you still take Relafen, I wonder if your rheum would perhaps ok some other anti-inflammatory that doesn't confer swelling as a common side effect, to see whether you could get the benefit without the downside? But, of course, he might have a specific reason to have chosen Relafen.

Let us know how your checkup goes. Wishing you GOOD LUCK & sending hugs, Vee

 
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Old 07-08-2017, 04:42 PM   #12
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Re: Foot Pain

The swelling has been there since before I started taking Relafen. It is only in my knuckles and fingers not the rest of my hand. What is AB?

 
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Old 07-09-2017, 04:06 AM   #13
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Re: Foot Pain

So sorry, by "AB" I meant antibodies. So, since your swelling was there BEFORE you started the med, you might ask your specialist how common such swelling is in patients with positive anti-RNP. I've seen the term "sausage fingers" for people with Mixed Connective Tissue Disease = MCTD; and the diagnosis of MCTD always requires a positive anti-RNP, which is what made me wonder... Anyhow, keep us posted, OK? Sending warm wishes!

 
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Old 07-09-2017, 10:48 AM   #14
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Re: Foot Pain

Thanks for the response. Not all of my fingers swell. And it is deep in the tissue. If you didn't know how boney my fingers are, you probably wouldn't notice the swelling. My doctor is somewhat conservative, but he really keeps an eye on things. I'm already of Methotrexate, so if it is RA or MCTD, it would be the go to treatment. He is concerned because he said if I have swelling in my hands, I probably has inflammation in my organs. But I have seen a very very small improvement. Hopefully the increase in methotrexate will help.

CCC

 
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Old 07-15-2017, 02:28 PM   #15
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Re: Foot Pain

The doctor doubled my methotrexate I can already tell my feet are better. But still having issues with my husband, he has decided I have sleep apnea and if I were treated I wouldn't have my health issues. Really ???

Xxx

 
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