[singergal64]

Hi Everyone!
I am old MG'er, going on 5 years now since diagnosis and thymectomy. The trouble i'm having is a blanket of discouragement or feelings of depression after I have the IVIG treatment, along with a headache and my joints aching. I have been having them 1 every other week for a year now. Is anyone else experiencing this? I'd really like to know.

[drejniak]

I have had 12 rounds of IVIG-the first month (4 rounds) I was a bit depressed and had bad headaches. I also had the chills most of the time.
the second month (4 rounds) I was doing better but still had the chills, was very depressed at the end of the treatment.
This last round, I was more depressed/angry because of IV access difficulty but still had the chills bad. No real fever with any of the chills. I think of the side effects meaning that the medication is working. Maybe that would help with you...
deb

[JANET P]

hi, had my first IVIG session for 5 days 4 weeks ago. gave me a splitting headache and really bad joint pain and muscle aches which are more or less better. still got slight soreness of the head though. i was cheerful despite all this as my generalised MG improved dramatically very quickly. beginning to wear off a bit now but I'm still functioning better. i am seronegative and on methotrexate and 9mg prednisolone. 3 years in still not making much progress hence trial of IVIG,

[Stellatum]

IVIG usually gives me a headache, sometimes lasting a month. This time around (I had infusions last week) my MG symptoms are much improved, but I'm really wiped out in general. I hope that goes away soon so I can enjoy having legs that don't let me down, etc.

As for depression, I don't know...depression can be so hard to pin down. I once had a pretty severe case of depression while I was pregnant (prenatal depression--a lesser-known version of the post-partum kind, I think) and didn't even connect the word "depression" with what I was experiencing until after I emerged from it.

Depression makes me feel like there's a board on top of me, and there are piles of heavy bricks stacked on the board. The exhaustion I'm experiencing now is sort of like that, too, only, I don't know, more physical?

Thank you for asking about this, though. I think that you're already ahead of the game, being able to identify what you're experiencing. I hope it lifts very soon, and that perhaps you can find a way to prevent it.

Abby

[AnnieB3]

I think it's worth your time to see your primary doctor about your symptoms. No matter the cause, aching joints should be evaluated, as should a persistent headache. They might do some basic testing, like erythrocyte sedimentation rate, c-reactive protein, CBC, thyroid panel, chem panel, etc.

Have you ever been depressed before? Does this seem different? Depression itself can be a result of a number of biochemical issues. For example, not having enough physical activity reduces the amount of endorphins and naturally occurring oxytocin in your body which can result in a decreased pain threshold and feeling of depression. A low thyroid can make someone feel depressed.

Do you eat fish on a regular basis? It's the "good mood" food! Do you supplement with B's, or have you tried SAM-e? There are more natural things you can do for feelings of depression.

I really hope you can find some relief for your symptoms.

Annie

[tysondouglass]

I just would respectfully say all those symptoms are normal and i experienve them everytime...ive had it 138 times and counting

Please dont be worried w the aching joints and headache i know that is easier said than done...but ur depression is another story. It can definitly get dissapointing w iv access and the lengthy amount of time it can take. But in my case would rather than having trouble breathing every month ya know?


Hope ya feel ok


QUOTE=AnnieB3;839485]I think it's worth your time to see your primary doctor about your symptoms. No matter the cause, aching joints should be evaluated, as should a persistent headache. They might do some basic testing, like erythrocyte sedimentation rate, c-reactive protein, CBC, thyroid panel, chem panel, etc.

Have you ever been depressed before? Does this seem different? Depression itself can be a result of a number of biochemical issues. For example, not having enough physical activity reduces the amount of endorphins and naturally occurring oxytocin in your body which can result in a decreased pain threshold and feeling of depression. A low thyroid can make someone feel depressed. U

Do you eat fish on a regular basis? It's the "good mood" food! Do you supplement with B's, or have you tried SAM-e? There are more natural things you can do for feelings of depression.

I really hope you can find some relief for your symptoms.




Annie[/QUOTE]

[AnnieB3]

Well, Tyson, I know you have a lot of experience with IVIG and PP, however, you can't equate your health profile with someone else's. It could simply be "side effects" but any new or different health symptom is worth a discussion with your primary doctor, in my opinion.

Annie

[jana]

There are TWO things in life that I don't think you should "play" with -- MG and depression. I have been suicidal due to depression (thank-you, Prednisone! ). And, I would HATE to think that someone might not seek SERIOUS medical advice about depression. Even IF others ARE getting depressed with IVIG -- that doesn't mean that YOU should just "accept" it and go on. Some people seem to be able to handle "mild" depression without any problem -- other people end their lives. I just had a BEAUTIFUL, TALENTED, and MOST loved cousin -- with EVERYTHING in the WORLD going for her -- end her life a couple of weeks ago due to depression. And she was ON anti-depressants! So, GET thee to a SPECIALIST PRONTO -- is what I say!!

Just as you hire specialists -- licensed plumbers, electricians, sheetrock hangers, carpet layers, etc. -- to build a house -- you ALSO need to see the RIGHT docs (as Annie and many others have so eloquently said) to get the appropriate advice on specific symptoms!

So, you may need to see a "shrink" -- but, don't be shy or embarrassed -- your LIFE is WORTH it!!! Whether your problem is bio-chemical, situational, or what-ever -- depression is SERIOUS BUSINESS!!

[singergal64]

Thank you everyone for your input! wow! It's great to be a part of this community!!
I do think my depression was ivig related, as time gets away from the ivig it has lifted. Yes, i am aware of this and try to be wise. My doctor and I are good friends and if need be I will see him.

Thanks everyone!! Hugs to all!

[tysondouglass]

Annie- I think that this is what is wrong with healthcare that we all care to desperatly to 'change'. Im not equating my health with someone elses, but when its textbook IVIG symptoms, after clearly going thru infusions..why not wait and see if they fade into the background? Its sad that its part of our life..but if i went into the ER or called my PP everytime I had chest pains/or whatever else, i would no longer have that PP and id owe my insurance more than they pay.

Im not trying to be rude, and I agree, if your unsure about something happening with your body, please please go in. But when your experienced with the symptoms theres no sense of emergency in my opinion.


Anywho- i had my infusion at a hospital this month and I found it to be much less professional. I fell asleep early during the infusion and then when I woke up it was at 800cc. 1 whole bottle had gone through in 46 minutes and I thought I was going to pass out, luckily I woke up (obv. w chest pains and horrible headache) and told my nurse to SHUT IT OFF! She was so unknowledgeable about what was happening and blamed it on the machine..

anyway, im done ranting, hope your all well.