Infection

[murphylotte]

Hi every one

Wanted to know...

Is bad infecion's a side effect from aps and also is any one else having joint pain??

[MaryF Administrator]

Hi, I guess having an autoimmune disease makes us more vulnerable to infection, and it is always vital to test vitamin D, Iron, and B12 plus the Thyroid to make sure none of this is low causing more inflammation or tendency to have infections. Hope this helps. MaryF

[murphylotte in reply to MaryF]

Hi MaryF

All my "Numbers" are really god so i don't think this is the case. The thing is i get tonsilitis and chestinfections in the summer time and was wondering if it had to do with aps.

Also i have joint paines.

Wanted to hear if others have found this to be a thing for aps.

My own specialist say these are not symptoms of aps and must be other things??

[MaryF Administrator in reply to murphylotte]

All I know is that if I get an infection, it makes me feel very very ill and all my joints hurt. My son has just had Pneumonia for the second time in a year, and also a form of cellulitis, he has Hughes Syndrome/APS and his diet, exercise and supplement are fantastic, so yes it all adds to the general picture of things I think. MaryF

ps I hope you feel better soon x

[murphylotte in reply to MaryF]

My joint pain is still here and it's long time since i had the tonsilitis. I do still have something in my body, like flu cos i have been sick since friday 14 days ago.

Maybe im just more aware of my body now.

And thank you MaryF x

[MaryF Administrator in reply to murphylotte]

If it does not calm down, do go back to your GP as this will have been caused by 'strep' which can sometimes linger and cause further problems. MaryF

[luisal in reply to MaryF]

Hello Mary, can you share with us your son's exercise, diet an supplements?

I have one of my own but very opened to hear about others.

Thanks in advance.

[MaryF Administrator in reply to luisal]

My son is not on Wafarin, so no problems with dietary or supplement interaction. He is on Aspirin twice a day currently although that could change at any time. Like me he follows a very healthy Mediterranean diet, with plenty of fresh fish, vegetables, some organic meat, also things like Quinoa, brown rice and lentils and beans are included. Also some nuts and seeds.

Also of course many fruits and vegetables with every meal including things like fresh avocado with olive oil etc.

I regularly check his D, B12 and Iron to make sure they are ok, he also takes omega fish oil, probiotics, turmeric and black pepper, Ester C, magnesium, D, iron and B12/Bcomplex as and when needed.

My diet is identical however I don't have gluten, we keep our black beans and beans and lentils in general fairly high as we are not huge meat eaters, I eat 3 or 4 brazil nuts a day for the selenium I might have got in bread. My daughters diet is the same, but she is strictly vegetarian.

We all take daily exercise either a long walk, a bike ride or in the gym in the garage, and all have a good water habit.

Basically common sense.

MaryF

[luisal in reply to MaryF]

Thanks Mary. iAs your son I am on daily aspirin snd follow more or les the same diet. But as I am also a yoguini (a woman yogui) I add daily yoga practice for mind and body and from time to time I go strictly vegan. As you say badically common sense plus a perrsonal focus.

Very helpful indicating exams you take as well as otc supplements. Common sense also but not in the scope of my Doctors !

Wish you the best

[MaryF Administrator in reply to luisal]

Not with all of my doctors, some of the tests I pay for myself, including my detailed thyroid profile! MaryF

[Lure2]

Hi,

I wonder if you have now got an APS-Specialist as your GP in Denmark said that he did not know how to treat you?

If we get ill we get it more serious when we have APS. That is my opinion. Are you still on the new oral anticoagulants? Hope you feel better soon. APS can be a bit tricky.

Best wishes from Kerstin in Stockholm

[stargazer5761]

I never had aches and pains until I was diagnosed with aps . But over the last 12 months I haven't been pain free . Mainly knees hips and shoulders .

[HollyHeski Administrator]

Along side if APSs is other probs. I have aps - also have sjogens -which is joint pain. Etc.... Get a specailist who knows both. Hope you feel better soon.

[murphylotte]

Thank you all for answeres

I have a specialist, that told me that my frequent infecion's had nothing to do with aps. Also the pain in my joint was not a symptom of aps.

But i do find that many mention pain in joints. I do also get very sick when i have an infection.

I have a girl on 6 years that bring home lots of "stuff" from School.

I dont have allegy, do get headache and have problems with my belly.

My question is if people with only aps, can have these joint paines.

When i had tonsilitis in the summer i Got a bad pain in my wrist's and it's still there.

Thank you

[murphylotte in reply to murphylotte]

I can only see my specialist 1 a year. So manly im talking with my normal gp.

I dont get blod tested or anything like that cos im on xarelto.

I fell fine, but when i get stressed my body catches stuff easier.

[Lure2]

I am primary APS and I have APS-Specialists.

I have pain in my hands and fingers so I do exercises which helps a lot. Moving, moving, moving. A couple of months ago I had pain in my left knee and had difficulties to lend on it and difficulties to walk from pain. It took perhaps 2 months and I saw a Rheumatologist and she said I had bad inflammations in both (!) knees. She suggested a "shot" after she had taken pictures of it all.

Two days afterwards the pain was totally gone!!!

My Specialist saw me 2 weeks ago and she said that it could come back any time!. Strange.

Try to get another Specialist who you can talk to and not your GP!! Important!

I wonder if Xarelto is approved for APS, INR 3.0 - 4.0 in Denmark? I know that you do not know what INR you have as you are on oral coagulants.

Kerstin

[Lure2 in reply to Lure2]

The pain was gone WITHOUT the "shot" after 2 days. That was strange I think.

Kerstin

[murphylotte in reply to Lure2]

Hi Kerstin

At least the pain went away. I still have pain but i get on with things.. I do notice it when i have to carry my girl or at work.

But if the gp say it's nothing i find it hard to keep asking Him/them...

[GinaD]

Do you remember that cartoon character,Pepe L' Phew the skunk? One doctor told me that autoimmune patients have immune systems reminiscent of this character : at the slightest provocation our immune cells draw the sword and say " Engarde!" Any infection or allergy issue can cause issues anywhere in the body.

[murphylotte]

Thank you all for answeres.

I will listen to my body and hopefully find a solution. At the minute my body is getting better.

Last friday i call for an ambulance cos i was coughing blod up. They checked all the works and Said everything was fine. I do however have been under stress aswell as the flu, maybe that's why my body react.

Thanks again xxx

[Lure2]

Try to get a new APS-Specialist who is more available!

What sort of symptoms did you have when you were diagnosed? Coughing up blood is not ok without talking to someone who knows APS. How long time have you been on Xarelto (was it Xarelto?)

As Holly-Heski suggests; get a Specialist who also knows Sjögrens! I do not think you have the ultimate drug to treat you. At least you should investigate it.

Kerstin

[murphylotte in reply to Lure2]

I went in to hospital 2 years ago with PE, water in my lungs and infection.

Last summer i got my diagnose of aps and faktor 2. I didn't get medication until i found this group, then i contacted my gp and got xarelto.

Im not as tirred anymore but also i do take Care of myself and try not to overdo things. My joints are hurting at times.

When i started xarelto, my monthly lady time became a pain... Like Labour pain none stop. Had an op in marts and have only had minor symptoms since until now.

I will try and investigate for another specialist but other things come first.