Author Topic: Running out of options?  (Read 5852 times)

anita

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Re: Running out of options?
« Reply #30 on: November 20, 2013, 06:23:41 AM »
I'm glad they are doing the IVIG with steroids by IV.   

I certainly hope they can start sooner then Jan.   BUT, you need to be over this reaction BEFORE you try the IVIG.

Have you ever taken steroids (By IV or higher dose oral)?   Did you find it helped with flares (particularly itching/burning)?  If so, then it might help you get through the IVIG. 

My best advise for your first IVIG is fluids, fluids, fluids...and BTW, did I mention fluids...LOL  I'm serious though.  Extra fluids in your system really help.  There are many articles about fluids being very important to help avert reactions with IVIG.   Also avoid caffeine, since it's a diuretic. 

My protocol is to take the benadryl & Tylenol, then infuse the IV steroids....then wait 30 minutes.  During this 30 minutes, I get steady IV fluids, and I drank more fluids.  Then at the end of my infusion, I get yet more IV fluids for a good 20-30 minutes.  And I drank fluids throughout the infusion.

Have you ever discussed your itching/burning with your neurologist?  I don't know about other treatments he could offer, but would be important to tell your neurologist about this very significant part of your medical history...since it happens frequently, with numerous meds, sometimes by itself, with flares.  The most telling sign of it being neurological is the burning...that is classic  (PN) neuropathy, which you have!!  It might open doors for him to try other treatments.

Of course Sjogren's is associated with depression...most AI diseases are.  I just caught your mentions of this when you have flares or with these reactions...both of which is when you take benadryl.  It also stops when the flares/reaction stops...and you stop taking benadryl.  May be a coincidence.   I know the reputable drugs.com reports for health professionals that benadryl "nervous system side-effects include depression with drowsiness and sedation in NEARLY ALL patients treated".  Just a thought.

So exercise would be a good thing....anything to take your mind off this for a while.  Bake some cookies, make some popcorn and watch a movie, do some light exercises or go for a short walk.  You need a break...what ever works best for you!!

Have a great day, Elaine.










52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carolina

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Re: Running out of options?
« Reply #31 on: November 20, 2013, 03:05:22 PM »
Actually I always take Benadryl at night.

So I never don't take Benadryl (yes, that's a double negative!).  I always take Benadryl is a better way to put it.  To help me sleep.

I took lots of oral prednisone when it first came out, in the late 50's actually, when I was 18.

It cleared up my severe eczema, and made me anorexic and paranoid.  It was interesting, to say the least.

I haven't had it since, except twice as a pulse pack for allergic reactions: Once to Sulfa, and once to an insecticide my husband had used in the attic and cellar.

The palms of my hands are throbbing with itching and tingling right now.  my face burns like a sunburn.

It's probably a form of neuropathy, but when I recently had the EMG on my arms and hands, they're OK.  It may be another kind of neuropathy.

My doctor does not think I have Sjogren's since I test negative for Sjogren's.  The Neurologist.

I am having the worst brain fog of my life, and I'm in the worst possible mood.  All of my family in in the kitchen and living room getting ready for a big dinner. and I just want to stay here in the bedroom.

More people are coming…there will be 11 at dinner I think. 

I have to go out and join everyone eventually.  But not right away.

I took two Benadryl and three Tylenol a few minutes ago, so I hope they kick in soon.

This is like a very very bad flare, and I feel like a witch.

Hugs, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Carebear

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Re: Running out of options?
« Reply #32 on: November 20, 2013, 03:40:45 PM »
Oh, Elaine sweetie.  I hope you feel better soon.  Well enough to enjoy your big gathering and feast.

You are not a witch dear one.  You are a precious angel.   :-*
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

anita

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Re: Running out of options?
« Reply #33 on: November 20, 2013, 06:12:31 PM »
It's the ones that take long term benadryl that have the most problem.  Do you take 'more then usual' during your flares?  Does the 'more then usual' coincide with your depression and flares?

Do you remember if the steroids helped with the sulfa reaction or insecticide?   Was it the same type of reaction (itching/burning)?  If so, I bet the steroids will help what you are experiencing now.  Do you think a pulse pack of steroids would help this, based upon your past experiences?

It does sound like neuropathy (itching/burning).  I know you've had EMG's, but have you have a skin biopsy for small fiber neuropathy?  The itching/burning are more like small fiber neuropathy...damage to the unmyelinated fibers.  It also goes with the autonomic dysfunction you have (because autonomic is small fiber nerves).  Treatment for SFN is different then the large fiber PN, that you have.  You should definitely bring this to the attention of your neurologist at Duke.  If you research the itching (especially burning), you will see so much on SFN...it is the hallmark symptom of SFN.  And SFN can be just legs, just arms, or any combination...including common full-body or sporadic places like face, ears, hands, etc.

I hope your dinner went well and that you were able to enjoy the company and put some of this out of your mind for a while.  What type of hobbies do you enjoy?  I think you would benefit from a few days of 'me time' to enjoy your favorite things.

Just know that we are thinking of you and hope you feel better soon. 





52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carolina

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Re: Running out of options?
« Reply #34 on: November 21, 2013, 05:50:30 AM »
Thanks Anita,

Your ideas are all so good.

BENADRYL: I doubt if it's the Benadryl, really.  When I was flaring with the IgG I took Claritan during the day, not Benadryl, so I didn't add to the Benadryl until this last time when I felt desperate.

I think this is the depression that is part of the flare syndrome for me.  I take Cymbalta regularly, 60 mg, which an antidepressant but I really take it for pain.  The depression clearly just comes and goes with the itching, profound fatigue, headache and bone pain. 

DEPRESSION:  I just find the depression so interesting because I can't separate it out as easily as I separate out the other symptoms.  My negative attitude seems to be a logical evaluation of what is going on instead of severely skewed by my flare state.

It's like I have to split my brain and talk to myself in order to deal with the depression part of my brain.  I don't know if that makes sense, but It feels like sitting in the light, and telling your eyes, no it's not really dark in here, while your eyes keep saying It's SO DARK.  And all the time, because of the flare your eyes are closed to the light.  And you just cannot open your eyes no matter how hard you try.

I'm in several book clubs, and on the board of a large Newcomers Club.  Right now both my sons (43 and 49) are visiting and staying with us, and the three local grandchildren will be here for the weekend.

It was a family dinner last night.  Usually I have an event like that organized down to the last fork.  But I just couldn't do it, and was made crazy by the chaos of the event.

This morning I'm cleaning the kitchen, running the dishwasher, and I do feel better.  The itching and burning is much less, all the flare symptoms are subsiding now.  It's a week from the IgG infusion on last week.

I think underlying my current feelings is the rather clear knowledge that I probably won't tolerate the IVIG either.  I have to stop focussing on that, since I don't really know that yet.

AND, when all is said and done, if I cannot take IgG it won't be any 'worse off' than I was this time last year when I didn't even know what my Immune Deficiency meant.  And I will probably just have several infections during the winter, and deal with them as they come.

And soon my Neurologist will give up on his quest for the cause of my Peripheral Neuropathy.  Yesterday I got the results of part of the blood tests I had at noon.   I don't have Hepatitis C.  Well, I didn't think I did.  And I'm doing a 24 urine collection to see if I have a copper problem which I"m quite sure I don't have, either.  There are two genetic conditions that involve copper:  Wilson's Disease, and Menkes Disease.

THe intense focus on my health has produced one clear piece of information for me.  Underlying all of my health issues is my Immune Deficiency.  My immune system is not protecting my body.  Everything else has risen from that, including the chronic infections that led to the routine ingestion of the antibiotic that most like caused my Peripheral Neuropathy.  And 25% of those with my Immune Deficiency have autoimmune conditions.  Mine are never found on tests, but I know I have them.

So I now have what is called a Unifying Diagnosis.  Something that explains all of the conditions and symptoms that plague my health.  It is Immune Deficiency.

It is very possible that my deficient immune system will not tolerate the one treatment that would help it:  addition of IgG to my blood. 

If that is the case, then I will have to accept it, as I accept my intolerance of opioids.  As I accept my Peripheral Neuropathy and attendant disability.  As I accept my osteoarthritis and that my knee and neck and hands will never work properly and will always hurt.  As I accept my fatigue, periodic flares.

Today the depression is much less, and therefore I can contemplate accepting those things and still having a worthwhile and interesting life.

Hugs, Elaine


Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

anita

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Re: Running out of options?
« Reply #35 on: November 21, 2013, 07:04:51 AM »
You know, I was reading your last post and for some reason looked back at the subject....Running out of options?  I'm sure you feel you are in fact running out of options.  But as I see it you are just now opening the door to the bigger picture...which has MORE then just options.

Please don't let your neurologist give up his quest.  He doesn't know he's missing anything, because he doesn't know about some of your symptoms.  Go out of your way by giving him the tools he needs to find the answers...tell him about the profound itching/burning.  Ask him about small fiber neuropathy.

This is treatable in many cases and can open all those doors you feel are closing.  It can explain why your body responds to IgG the way it does and you might be able to find a way to stop this itching/burning AND control your infections with IgG.

There is more then one type of PN.  Once they found your profound PN by EMG, they never looked further.  BUT there is small fiber neuropathy (SFN) that is just as profound if not worse then your large fiber neuropathy.  You have talked about your autonomic dysfunction as well...this is a part of SFN!!  You have the all the classic symptoms.  Search this forum for SFN...go to the PN forum and ask there. 

I hate to see you right at the doorway of possible answers/treatment, and not open it.  I know this entire road has been draining, frustrating, and full of uncomfortable symptoms.  I hope you find the strength to pursue this.  When do you see the neuro again?

You should focus on your book clubs, and enjoy all the pleasures in your life...every chance you get.  Distraction is a great tool to escape the pain and symptoms of our conditions.

Take care, Elaine.  I hope you have a great day today!!  Please keep us posted.

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carolina

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Re: Running out of options?
« Reply #36 on: November 21, 2013, 09:38:21 AM »
THANKS, Anita.

I will send this neurologist a list of my additional neurological symptoms.  I can send him an "in the system' email which he will read.  I will write it carefully before I cut and paste it into an email in the Duke system.

You're right, he probably doesn't have all the information he needs, although I don't even know for sure that he isn't going to proceed beyond this level of tests.  I've just made that assumption.

Really it is the depression that goes with my flares that makes me negative!  My heart goes out to those who suffer from depression on a regular basis.  It is such an insidious condition, clouding everything in such a convincing way.

My family refuses to talk with me at the level you've been willing to help me, Anita.  They hear "problems"  they feel "depression'  and they tune out immediately.   I don't blame them exactly.

This is the place I've found the greatest support in my entire life.  Amazing.

Hugs, I'm off to write my neurological symptoms in a creative concise way.

Elaine

Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3