Strange symptoms--why??

[irish]

I have had some strange stuff going on for about 5-6 weeks. I have felt worse than usual which is something that is hard to isolate and explain to anyone cause I don't really understand it.

Basically I have had occasional mild short chills and one time 99 temp that I caught. Headaches off and on which I related to my terrible dry scabby nose. Just loss of energy and terribly fatigued and unable to do much of anything.

After my infusion a weeks aqo Tuesday plus my 1 hour 15 minute appt with immunologist I started feeling worse. Immunologist is ready to do another immune suppressant and I am to have CT scan lungs and blood work on the 14th of April prior to infusion. Meanwhile, I saw my internist yesterday and had blood work and put on doxycycline for 3 weeks. My nose is so sore and I have sores inside plus some bleeding on the one nasal passage. Also,my nose is swollen up on the outside and that side is really sore.

Blood work showed WBC of 14,300 so obviously I have an infection. I am to have CT with dye of sinuses, nose neck, etc./ I also have a swollen feeling in the right side of my neck  which is very weird. I have an opinion on that but will wait til scan comes back. I have also had aches and pains in every joint, muscle and many tendons are sore. Just ache all over and feel miserable plus the pounding in my nose. I had a rash on my inner lower arms for about 5 days plus on the knees about 1  1/2 week ago.

I am wondering if this is related to being on the prednisone dosage---I am now in the process of tapering and so far so good. The other possibility is that of lupus. My immunologist has always felt that I was going to convert to lupus but so far the blood work has not shown up anything. I imagine I will be checked again. Obviously the methotrexate is out of the picture for now.

The thing that really impresses me is that I was able to raise a white count despite my low t-cells. For that I am thankful. I sure have a hard time knowing when I am sick though as my symptoms and bodies reaction is different than it was when I was more healthy. Take care all.

Oh, I forgot to mention that I had a very bad fall in January and another one in February and have been weaker since the first of the year and more unsteady on my feet. Me thinks that losing a spouse is very hard on a person with autoimmune disease. Too much stress! Irish

Also eyes hurt a lot and sun sensitive for the last couple of weeks. Different for me!

[Kendo]

Wow, you are going through a lot, Irish, especially in a rough year already. When I had a bladder infection (I couldn't feel it) I had painful achy ankles for weeks which later had a rash on them. Maybe your body is reacting to the bacterial proteins and throwing you into an autoimmune flare.

I was told Wednesday I don't have lupus or Sjogren's but have so many symptoms of both. I remember Ann Parke at the Canadian Sjogren's Patient Education conference saying that Sjogren's is lupus of the mucous membranes so it is no wonder so many people have overlap symptoms.

Take care and hope you feel better once antibiotics kick in.
Kendo

[ohiolady]

Irish,

The first thing I thought of was losing your spouse.  I haven't lost mine but can imagine the incredible pain you have gone through.  We all know stress is the worst trigger for autoimmune.  I feel so badly for you.  Irish, I am wondering  why you are losing your balance??? I really have no words of wisdom, just  a lot of empathy.

Do keep us informed.  You have a lot of people who care about you on this board.

Anna

[irish]

Just a note about my balance. Loss of balance was one of the first things that hit me when I started going downhill back in early 90's. Then I lost the hearing in my right ear and then I had to have a labrynthectomy and nerve section. In other words they took all my hearing apparatus on the right side plus drilled out the hearing nerve where it comes through the base of the brain. This left me with permanent 50% loss of balance.

I went to vestibular rehab and have really done quite well. I always have balance issues, but when my autoimmune disease kicks up the balance gets worse. Irish

[Head2Toe]

Irish - I'm sending you a huge virtual hug and loads of healing energy.  I wish I had some words of wisdom, but alas, I rely on you for that    Thankfully it sounds like you've got a team of doctors who are dedicated to solving the mystery.  I hope they are able to provide you with some answers and that you start feeling better soon.

[jackfrost]

Hi Irish,

I am so sorry that you lost your spouse and that things are so hard for you right now.  Being sick on top of all else is just the pits.

Prednisone is a strong immuno-suppressive, right?  That is why it reduces inflammation? 

What I am getting at is that if you have an infection as is indicated by your elevated white-cell count, then should you be on prednisone?   If your immune system is suppressed, then your  body may not be able to fight off even simple infections, and this can lead to sequential organ failure and then sepsis.

That happened to one of my closest, lifelong friends last year.  He was taking 5 mg/day prednisone (6 feet tall, 190 fit pounds) for about two years for a systemic, cutaneous vasculitis.  One night he woke up sick, went to the ER, and within just 16 hours he was gone.  There was nothing the doctors could do because his body could not fight any infection, which was attributed to the long-term prednisone use. 

Prednisone must be an immuno-suppressant as strong as Imuran or Cellcept, although it works differently. 

If I am not correct about the ability of too much daily prednisone, for too long, to over-suppress and then crash the immune system, please someone make a comment to tell us about it.  That is specifically what the doctors at the hospital said happened to my friend.   If prednisone can crash or even interfere with function of the immune system, should you (Irish) be taking it while you have an obvious infection?

[irish]

I have been on prednisone for years because of my myasthenia gravis. I have been on the 10 mgm every other day which is a physiological dose. In other words it sort of mimics the bodies natural production of steroids. With myasthenia there is muscle weakness and it can affect the diaphragm and cause a myasthenia crisis. This results in respiratory arrest which can lead to death. Patients with myasthenia can end up in the hospital on a ventilator and have a long complicated hospital stay.

I have had time when I would need more prednisone because of the increase of weakness as my myasthenia would get worse. I have been trying to get back to my 10 mgm every other day and a new plan was just started last week that seems to be working for me.

So, yes, it is possible that the prednisone is involved in this constellation of symptoms. The interesting thing is that so many of the symptoms are also like an increase of autoimmune disease. The sores in my nose have been bad the past couple of months and my internist is checking out some other diseases in the midst of this mess. She is very aware of the prednisone etc. as am I. The fact that I am tapering down is a good thing.

Immunologgy feels that if I can get down to 20 mgm every other day they will be thrilled. Of course, they think 10 mgm every other day would be ideal. They deal with lots of autoimmune disease and prednisone all the time so I am thankful to have their support. The prednisone taper I am on is one that will shock my adrenals into producing the steroids on their own again. Time will tell how long it takes for this to improve. Thanks for all your support and input as I go through this. Thankfully, I am feeling some better after 2 days of antibiotics. The doxycycline I am taking is also good at improving inflammatory disease issues. Irish

[Pbrain]

Oh Irish, I'm so sorry to hear about your loss! I haven't been here in a while (started working full time) but I know how much of a rock you are for this group despite all you go through.

The stress of losing a spouse would certainly set off a flare. When my dog died (whom I'd had from puppyhood, my shadow), my bladder problems became the worst ever and I ended up in the ER. It was easy to see in hind site what had happened but I hadn't been expecting it. We should maybe work as a group to come up with a sticky for how to cope with major life stressors. 

Fwiw, as an example, I have a seizure disorder but even with my seizures under control, I'd been experiencing episodes of all-over body shaking after stressors. My doc had prescribed Xanax to calm down the shakes. But I also found that when I took (a tiny dose) a half-pill before a known stressor, I was able to head off any side effects. I was calm during the stressor so didn't suffer afterwards. Obviously, I didn't do that when my dog died.

Hugs!!

[cccourt1942]

Irish,
     You do have a lot going on.  I wanted to say (and I do recall I am older than you) but taking two falls in two months....that's a shock to a senior citizen's system!  I sprained both ankles in two separate falls nearly two years ago.  I still suffer the aftermath.  Both ankles have been broken twice and had BAD sprains at least three times each...so were already weakened.  Those last two sprains surely didn't help me any!
     On top of that, let me remind you Christmas, 2014 was your first without your husband.  That is an emotional event.  I remember the emotions even though I was with my grandchildren my first "alone" Christmas.  Don't discount your emotions during all this. 
     And last: your doctor appointments and upcoming tests, etc. sounds like you are managing your symptoms and conditions very well.  Focus on that...and practice patience while you await findings.  Easier said than done, eh? 
     Have a pleasant day.  Oh..the sun sensitivity...I am happy to report after restasis, and all my meds (which includes 5mg prednisone daily) my shutters are open to the sunshine.  A few years ago I kept all windows shuttered...plus was known to wear my sunglasses in my home.  My sun sensitivity began suddenly while going thru menopause.  Sound sensitivity occurred at same time.  I empathize with that aggravation.
     Enjoy your week-end.  c3

[Carolina]

Dearest Sjogren's Angel Irish!

Strange symptoms indeed.  You have so much to bear already, and finding out what is going on and why is a major challenge.

I wonder what, if anything, will be changed in your protocols for a diagnosis of Lupus?  It seems terrifying to me that Prednisone isn't the magic solution to everything for you.  But I guess inflammation from infection has a different profile from inflammation due to Immune System attacks.

Because of my profound neuropathy and moderate hearing loss in both ears I have scary balance issues, Irish.  I'm another bad fall waiting to happen.  It is hard to be patient enough to move slowly enough, and even slowly isn't alway the answer, or enough of an answer.   It is also hard for me that my husband seems impatient, walks ahead of me so often, and generally adds to my stress.  And of course it's MY problem that I let this add to my stress.  His behavior is none of my business.

I just find the escalating list of maladies along with my advancing age (when doesn't it advance?  well, we KNOW when, of course) very difficult.  I need to look again at How to be Sick, which has given me a great deal of solace and help.

I haven't had an infection since I started on IVIG, Irish.  I guess I have the illusion that this will stay the same!  My illusions are that things won't change, when of course, change is the one certainty.  I don't have a deficiency of IgA, however, and I think that's what saves me.

There is no 'recovery' from the loss of your husband, Irish.  I wish there were.  I do think that eventually the pain will be more manageable.....the key is to survive the loss long enough to get to that point.  You are so right that this stress is beyond description and so extensive in your life.

Rest, and I understand that humorous movies and stories can be very healing, too.  Lightness, hope, and more rest, rest of body, mind and spirit!

Hugs,  Elaine

[loulou]

 hi irish

sorry to read your going through it all - I hope you get some relief from your sore painful symptoms and hope your CT scan goes well. Be kind to yourself and find something you enjoy. Mine is listening to some old school/motown tunes.

be thinking of you and send you some big hugs.

xloulou

[Dawnmist]

Because of my profound neuropathy and moderate hearing loss in both ears I have scary balance issues, Irish.  I'm another bad fall waiting to happen.  It is hard to be patient enough to move slowly enough, and even slowly isn't alway the answer, or enough of an answer.   It is also hard for me that my husband seems impatient, walks ahead of me so often, and generally adds to my stress.  And of course it's MY problem that I let this add to my stress.  His behavior is none of my business.

One of my best friends has Fibromyalgia and sero-negative Rheumatoid Arthritis (they think...there's visible erosions in joints, but they've toggled between rheumatoid and psoriatic a few times and all her blood work is negative) - and with it has severe balance issues. Over the last year she's been training an assistance dog as a mobility support dog - he braces her when an attack of vertigo hits, won't let her move off the spot until it clears, can now pick up on one starting before she does, picks up things she drops (like keys, wallet, phone) due to pain in the hands/hands not working very well so she doesn't have to bend over and trigger vertigo, helps her manage stairs, etc. He's a curly-coat retriever (largest of the retriever breeds) - and he's made an enormous difference in giving her back some independence after repeated falls due to balance/vertigo issues. She hasn't had a bad fall since. If you're not allergic to dogs, it might be something worth looking into. Of course, it does have its downsides too - the general public don't really understand assistance dogs for anything other than blindness, so she gets a lot of people coming up wanting to pat/tell her she shouldn't have a dog here/wanting to ask lots of questions/etc.

[Sleepy In Seattle]

  I have no good advice for you, but I just wanted to say I'm sorry to hear you have even more on your plate right now. I'll be sending you health and happiness via whatever pathway the universe will allow! (((((hugs)))))

[grammad97]

Dear Irish-

Stress is always such a culprit eroding our health and well being.
You are always taking care of all of us here despite all you have going on.

I am sorry for all you have going on but grateful you speak of the confidence you have in your doctors.
I pray you will be feeling less aches and on the mend from the infection.

Rest as much as you can.

[susanep]

Irish I am so sorry for all you are having to deal with. It's not the same, but I know when mom died it was the biggest terrible thing for me and my family to deal with. We were close. I still to this day write to mom in a journal when I feel sad thinking of wishing she was here to talk too.

I have my husband here though, and that is what makes it so different. I don't know what I would do in that situation. I went through a divorce with my first husband which on some level was like a death of a different sort, but still not the same.

You are in my prayers, because that is all I know to do. I believe in their mercy and power though.

I don't know much about the prednisone things, since just this past month my new endo put me on 5 mg. I had a low reading of how my adrenals were working.

I just hope you get to feeling better soon. Do you have people close in some way you see? I hope so.

Life with these disorders sure throw a lot at us I know. We all love you.

Keep us informed, because we want to know.

Hugs,
susanep