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Long lasting symptoms or effects of interferon treatment

Hello,  My mother completed HEP C treatment (interferon) approx. 2.5 years ago.  She is now experiencing serious body aches and pain as well as depression.  The doctor says is not related.  Has anyone experienced these and other symptoms? If so, can you share information and advice?  Thank you very much!
29 Responses
Avatar universal
hi, My experience is too new to respond to your question but I'm sure you will have lots of kind people trying to help. Did your mother respond to the treatment?
Avatar universal
I saved this grouping several months ago when we talked the topic of tx (and post tx) side effects to death.

A lot easier to re-post the old threads than to repeat. These threads reflect the diversity of opinion of this discussion group at that point in time.

Anyone who wants should feel free to copy these threads (or add to them) and post them at any time to further to any future discussions, just as Chevy did now.

-- Jim
Avatar universal
BTW, thanks for the credit, but not necessary in the future. All I did was collect the group consensus.
Avatar universal
Hi, thanks for writting. Yes, she responded well. the desease has been undetectable so far.  However, her quality of life has been so poor lately I constantly worry about her.  I find myself in tears at times and feeling helpless.  I wish I could help her and don't know what do to.  She is suffering from depression and on top of it, she feels terrible most days.  Everyone who knew her pre-interferon says she has aged a lot.  Her hair is different, she has a never ending facial rash (rosetta?) and she is having difficulty walking as a normal person would.  
We have had 3 visits to a neurologist and just yesterday he explained the recent PET scan results to us.  He believes she is exhibiting signs of early Parkinsons desease but it is still too early to tell.  I just feel overwhelmed by all this and don't know if there is anything else I could be doing to help.  Thank you for listening.
Avatar universal
Hi everybody.  I am a week shy of being 5 mon. post treatment.  The itching, especially on my arms & legs is driving me nuts.  It's not dry skin, I can assure you of that.  I feel hot practically all the time unless I'm outside & it's about 60 degrees outside or I run the A/C down real cold.  It's like a radiating from the inside heat.  My skin doesn't feel particularly sweaty, more like a clammy feeling.  I notice it mostly in the 12 noon to 6 pm time frame, when I exercise, get in the sun at all, shower, or get in an environment where someone is not keeping the A/C low enough or has the heat on too high.  All of these things.  Which means, I itch every day.  Get too hot, every day.  I drink plenty of water, so I'm not dehydrated.  I believe this is all post treatment related.  I feel nervous way more easily.  I still do not have a lot of stamina.  I can do something for approx. 2 hrs, if I'm active & then, I literally have to sit down. For example, shopping, housework, going out like to an art show, or something where you'd have to be up & on the go.  If I'm sitting I can last for a longer period, but I still need to be half reclining after approx. 4 hrs.  This is not just laziness because when I'm able to feel good, I'm trying to get a lot of things done.  I still push myself to exercise, but when I do, I am done for the rest of the day as far as activity.  I'm still having sleep problems & can't sleep but about an 1-1/2 without taking Ambien.  The muscle aches (or possibly a fibromyalgia thing) & bone pain, is still a big issue. I really want this to go away.  I don't know how much of this is related to the Hep & my not ever clearing &  how much is related to all the treatments.  I just know that it's worse now in the last 5 mon.  I don't really have a rash that I can see, so that doesn't explain the itching either. I do notice when I look @ my skin closely there are more & more of these white dots (like a lack of pigmentation thing).  I've got an appt. with a dermatol. in Dec. to see what she thinks. I don't see liver guy until Jan. 3rd wk. I don't think it's hormonal, I'm on HRT. Sorry to complain.  Susan
Avatar universal
Sorry you're still having lingering issues. It took close to six months for my post tx skin problems to resolve and I didn't treat as long or hard as you did.

Seeing a dermatologist is a good next step. Meanwhile, I'll share some non-medicinal skin care regimens that helped my itching.

(1) Use Cetaphil Mild Cleanser instead of soap.

(2) Shower in luke warm water, but not hot or cold.

(3) Pat dry with soft towel. Treat your skin like a lady :)

(4) If possible wear all cotton or silk clothing and preferably white and preferably loose.  Wool and synthetics can be very irritating next to the skin. If you have to wear wool, wear a silk liner underneath. I practically lived in silk long Johns for stretches of treatment.

(5) Only use non-perfumed laundry detergent and rinse everything twice.

(6) Change pillowcases and bedding as often as you possibly can.
At one point I was changing pillowcases daily.

(7) Heavy moisturizes can sometimes clog the pores and be counter productive. Experimentation is the key and sometimes less is more. I found Cetaphil lotion and cream to be less irritating but everyone is different. If something isn't working, stop using it and move to another brand. The really expensive creams and lotions at women's cosmetic counters are some of the worst. I finally threw away my Creme de Nuit. LOL.

(8) Try relaxation, breathing or mediation. Some excellent tapes on the internet. Go to amazon.com and enter search words like "meditation", "relaxation", etc.

(9) Be patient. Your skin should get better but it may take more time.

(10) Lastly, and this is tricky -- try not to let your derm over treat. Of course you want relief, but the derms I went to treated my symptons the same as if I never had been on combo treatment. Truth is they don't know much about it. In the end, time will be your best healer as you start distancing yourself from the treatment drugs.

Hope this helps.

Be well,

-- Jim
Avatar universal
has your mother have these symptoms throughout tx and post tx?  It sounds as if she might have started having the symptoms 2 years post tx?  If so, it would be very hard to find a correlation bt her present symptoms and the meds she stopped taking two years ago. Hopefully is not parkinson's, but a good neurologist should offer some good suggestions and medications that can keep her functioning and improve her quality of life.
Avatar universal
Child just made me remember Balnetar Bath Oil. It gave me some relief from itching. I'd soak in it at night and then gently towel dry. You don't want to rinse it off with water. Only caution is to make sure you clean the tub after each use. If not, it will eventually stain the porcelin. Don't ask me how I know :) Most druggists do not carry it but some will order special. You can also buy it on the internet. It was recommended to me by a derm for psoriasis. The oatmeal soak as mentioned is also very good. Just try not to stay in the water for too long because ironically bathing in water can dehydrate the skin.

Balnetar: http://tinyurl.com/ycatk8
Avatar universal
By all means read the threads that were posted above regarding lingering effects of HCV tx.  This is an issue that has been finally getting some widespread attention, and there are many post-tx'ers out there complaining of similar problems after ending their therapy.  I am over three years SVR and since one month after ending tx have experienced a range of neurologic, arthralgic, rash, and fatigue related symptoms.  You will see descriptions in the posts listed, but please do be aware that this is a problem that others also share.  An independent survey of post-tx patients was done in the past year and demonstrated that a large number of people feel worse after tx.  I believe it was somewhere in the range of 35% of those surveyed.  Many specialists in the medical profession are beginning to describe the pattern of post-tx problems that they are seeing, and a few are treating their patients with different medications.  Rheumatologists seem to be getting a good bit of this spillover after tx, as well as neurologists, and GP's.  

As you will see, there are few answers yet to this problem, and little acknowledgement of the problem within the HCV specific medical community.  Although many HCV doctors used to tell patients that they would feel good in a few weeks or a month or two, I now note that many are saying that it might be a year or more before the post-tx 'hangover' symptoms fade.  They are being dragged kicking and screaming into the realities of the post treatment experience for a good portion of us.  It is impossible to know how long the post-tx sx might remain, and for some it really is only a few weeks or months, and for others a few years, and for yet others, no relief yet after more than a few years.  

Keep in touch with this forum, and I am sure you will read periodic threads on this subject.  Maybe you will even see some answers being found for these disabling, and nagging symptoms, in the coming years.  For now, about all you can do is live very healthy, eat well, exercise, and see appropriate specialists to address the lingering sx.

Good Luck and stay in touch.

DoubleDose
Avatar universal
i am geno 1a stage 0-1 but have battled fatique for years and now that menopause is here it about stopped me in my tracks. BUT i was still able to push myself to get done what had to be done and enjoy some days. i started this tx thinking it would either work and take away my sore bones and tiredness or not work and i'd be back where i started minus a thyroid and a few hairs. am i way off base? thanks for talking to me - evy
Avatar universal
good point i guess success stories are out enjoying their success. hmm that makes sense. proves i'm not thinking clearly
Avatar universal
Hi, Elaine, thanks for asking, same old pains for the same old lady (ok, not so old), but such is life, pop a  vicoprofen and go on.  I hope you are feeling well and the cold does not make a dent in your bones! And your baby is doing as well as he can be.
colleges are stepping up their recruitment and we have endless letters to open and tons of websites to check. overwhelming.  Apparently the CEEB has some search feature for colleges to find the type of student they want and they have been using it!
We want to stay in the east coast, but REED college just sent their stuff to her and they sound pretty good, except all the way in Oregon! it will come down to who offers the most  money, because there are many good colleges and universities out there.  
I can't believe how many there are in Mass and PA!  Any input on other good affordable institutions is welcome.
So far, College of New Rochelle, Wilson in PA, MCLA in Mass and Reed in Oregon got our attention.  Harvard did too, but the fact that they ask for SAT II tests is a turn off.  I feel that if the student takes the ACT, it should count for the SAT II.  I have a feeling that Harvard will change this some time in the future, but not in time for us.  They have instituted what they call the Harvard Initiative, where families with income less than 60, 000 are not expected to contribute towards the young person's education.  Speaking of Harvard, did you hear about the paraplegic woman, recent graduate, that ran for the senate in NY? pretty impressive.
The whole process is so expensive, from taking admission tests and their fees, to exhorbitant application fees!  Asking for SAT II is just another money making scheme, given the fact that colleges offer their own placement tests.  ok, enough ranting.  Are you sorry you asked? :-}
be well
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