Hep C Discussion Forum

Hi Jayne,

This is kcastle129's thread, if you would like to discuss this more, please feel free to start a new thread of your own in our Living With HCV section.

A definitive diagnosis has to be made first. It's difficult to diagnose such things over the forum anyway. Better to avoid such things when the outcome is so important. If you're not getting clear and confident help from your doctor, do your best to find one you trust.

If you would like some medical articles on Cryo and HCV, I can add a link in that new thread. 

Hi,

Hope the hep PA DOES conflab with the neuro and rheumo guys.

I am very glad to hear he has been having some less distress.

Did he notice any "head" side effects over the last 3 or 4 days, what with these new meds? Some people do. If gaba is a new drug to him, never taken it before, just keep an eye on him, ask him - some people can react to gaba at first, many do not, and most only glean gaba's intended effect. Same for prednisone, in possible re-bound effects, the tapering off part is quite important, but more-so especially when someone has been on a high therapeutic dose for a long time, the longer you are on preg (generally) the longer and more careful the wean-off should be. 40 mg. of preg a day was pretty hefty dose, but true he was only on it a short time. What dosages of the gaba has he been given?

I am guessing he, you, and everyone involved is going to be OK, as long as there is consensus amongst all of you, and the cryo does not warrant the preg. You will all get it sorted and settled in short order to know what is best.

You are doing a good job in your communications with all these docs/modalities involved, in effort to know what is best - not an easy chore. I hope your Thurs. appointment helps. I did find a couple of things on-line explaining cryo-vascular effects effects (really just general learning stuff) and would forward you those if you like one day, but you have a lot of important stuff on your plate already.  C.

Hi again kcastle,

Ah! That's important info to know - he has indeed ALREADY been started his prednisone (since Fri).

Great you have gathered your data, and questions then, for a meeting of the minds with your doc this coming Thurs.

How uncomfortable is your husband? Has anything changed for the worse or the better since leaving the hospital, or, since starting the prednisone, and has he been allowed to take anything (aside from prednisone) for his discomfort? 

Was he started on the prednisone on a upward-graduated dosage? Was there any suggestion from the neurologist as to how long he might need to stay on prednisone?

(Just saw your post, I do think "cryo"-treatment decisions are likely based on educated "judgments of SEVERITY" - with most reliance from clinical labs/degree of involvement and progression, and perhaps less so, on subjective intolerability of cryo symptoms - I would guess. I re-read their thinking as ...  "yes, first line of defense seems to say treat the underlying causation if that be HCV, but also, in deciding to otherwise start treating the cryo symptoms themselves, the degree of the severity of the cryo is considered? It "seems" your neurologist feels prednisone is justifiable).

Whatever you two and all of your docs end up deciding is best, just know, just as he may have been weaned-on to prednisone, it may also be best to be weaned-off prednisone, when it is decided it is time to stop prednisone therapy.

Re: the previous article excerpt I posted to you:

Title/authors of article is below, It comes from a site called "Medscape", you have to registered to be a member, I can't forward the link, as when I do, the whole thing gets sent and anyone can see my personal sign-up info and access my account there (it seems). I'm not very computer savvy and cannot figure a way around it (other than just copying bits of pertinent text from pages and pasting it to people). I can copy and paste the whole article to you, about 3 pages or so, via PM if you would like me to do that, would be happy to, they also show 59 references.

"Cryoglobulinemia Treatment & Management"

·         Author: Adam M Tritsch, MD; Chief Editor: Herbert S Diamond, MD 

·    Last updated: Jun 15, 2016

·          Sure hope he is not feeling too bad. Just let me know if you want me to PM you the whole article.  C.

If you're looking for some additional information, the Vasculitis Foundation has a brief but interesting description.

Cryoglobulinemia

Excerpted article info about treatments of cryo-caused symptoms/vasculitis:

The goal of therapy is to treat underlying conditions, as well as to limit the precipitant cryoglobulin and the resultant inflammatory effects.^[43] Thus, hepatitis C virus (HCV) testing is required. HCV antibody or HCV RNA testing may be diagnostic. If HCV test results are negative and clinical suspicion remains high, these tests may be performed on the cryoprecipitate.

Asymptomatic cryoglobulinemia does not require treatment. Some authors recommend intervening as little as possible except when faced with severe deterioration of renal or neurologic function.

Secondary cryoglobulinemia is best managed with treatment of the underlying malignancy or associated disease.

Otherwise, cryoglobulinemia is treated simply with suppression of the immune response. A paucity of controlled studies evaluating the relative efficacy of various therapies limits the use of existing data.

Nonsteroidal anti-inflammatory drugs (NSAIDs) may be used in patients with arthralgia and fatigue.

Immunosuppressive medications  -  e.g. "corticosteroid" therapy (= PREDNISONE or STERAPRED), and/or, cyclophosphamide or azathioprine (STEROID SPARING) are indicated upon evidence of organ involvement such as vasculitis, renal disease, progressive neurologic findings, or disabling skin manifestations.

The overall aim of therapy is treatment of any underlying condition and general suppression of the immune response. Mild anti-inflammatory medications (eg, NSAIDs) are effective in mild cases, and corticosteroid therapy is reserved for the more severe or refractory cases. Patients who require potent immunosuppression or other more aggressive therapies for severe disease should be treated by a specialist. Cyclophosphamide may be used as a steroid-sparing agent or administered concomitantly in severe cases of vasculitis, particularly in patients with renal disease. Azathioprine is commonly used as a steroid-sparing agent, and chlorambucil has also been used for severe vasculitis.

·         Consider the use of NSAIDs in patients with mild symptoms of arthralgias, fatigue, or malaise without  evidence of vasculitis

·         Consider corticosteroid therapy for at least initial therapy in patients with more severe symptoms such as vasculitis, neurologic findings, severe

      cutaneous disease, or renal involvement or in those who otherwise meet criteria for inpatient medical care. These patients may require additional

       immunosuppressive therapy and are best treated by a specialist.

Hi K,

Welcome to the forum. I'm sorry to hear about your husband's troubles and discomfort. You're correct in your thoughts on Cryo and HCV, they most certainly can be connected. The thing with steroids is their impact on the immune system. 

Here's an article on the subject. It's dated but describes the potential action steroids have on HCV replication and the immune system. You absolutely should get someone onboard that is schooled on HCV and the effect certain pharmaceuticals have on it.

Steroids and HCV

Hi kcastle,

Well, you and your husband have found yourselves in quite a predicament. So sorry for your troubles.

Folk here will certainly try to be of assistance, but we are not docs.

You do need sound, experienced medical advice to figure out the answer to your question about taking the prednisone (ASAP), because (1) you sound unsure it is the right thing to do, and (2) your husbands need treatment/relief of what is ailing him. 

What is your husbands current level of distress with his "cryo-symptom" condition?, did they treat him with anything in hospital for it, what other drugs did they use on him in hospital? Aside from the script for prednisone, have they given him anything else to use at home since discharge? They didn't "start" him on prednisone while in hospital, did they? - prednisone use often requires some careful ramping up and following - who was/is supposed to be in charge of "the following" of your your husband for this "intital start" of prednisone?  Does he have any other conditons other than cryo and HCV?, is he taking any other meds for any other pre-existing conditions? How was the prednisone supposed to be taken at home, did you receive particular instructions for it's use? - (i.e. so many mg per day, increasing to so many mg by ... etc.?) Ceasing prednisone often has a ramping down period too.

Being that your husband has received "diagnosis" and "opinions" and a "recommended treatment" (prednisone only?) by the neurologist, who has additionally referred him to a rheumatologist specialist as well, you have to consider what you need to do, in the immediate, regarding the prednisone, especially if he had already been started on prednisone in hospital.

I do not know how long you have been hanging on to this script of prednisone while you have been in doubt, nor how bad your husbands cryo-vasculitis is, but you need  ASAP to figure out what is best to do.

Right sharp starting Monday AM, I would be doing everything I could (in a hurry) to try to get to talk to the hep doc OR even your family doc, for an in-depth review of his labs, consults, referral notes, on the matter about whether to start this prednisone or not (or to continue it, as the case may be, if they already started him on it in hospital).

If YOU yourself do not have copies of all the lab work that the hep doc and the hospital-stay neurologist have amassed (that definitely made this diagnosis of his cryo-related vasculitis/auto-immune state), if you do not have access to all these labs (from both the hep doc and neuro), and the "consult report/opinion" (from the neuro) that was likely forwarded to (either) your family doc or your hep doc, and, additionally, the "referral note/assessment" the neuro must have sent to the rheumatologist he wants you to see - then immediately try to find out which doc has amassed the most of these reports and go see him/talk to him, (in a perfect world) tomorrow, to help with info and the best decision. If time is of the essence then your family doc might be a faster contact - I don;t know.

I can well guess you two are having quite a time of it, and need relief, assistance, not other pressures or mistakes, I wish all to go well for you too, but I have no other comfort to offer than to advise you to keep pushing yourselves to get this medical advice about the prednisone ASAP. I cannot tell you whether prednisone is right or wrong, I have seen prednisone help people with other conditions - I really have no knowledge about predisone use, especially in relation to cryo and HCV.

I am very glad he is going to get epclusa tho. 

Sorry I could not help, you just ended up with more questions versus answers fro me, but please do try to speak to a doc ASAP about the prednisone. C.