Sorry still finding my way on here will start a new thread...

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. 

This is what I believe I have and how I was finally diagnosed HCV...my right hand started to swell and I had broken capilliaries on the upper wrist to that hand. All my joints ache and feet but the hand is still swollen and red / cloudy looking.

....but  I did have several nights when I awoke with numb hands, completely numb...

my liver  consultant says it's not related but my doctor thinks it is so last week had X-ray...no results yet...but after reading this I am going to show my doctor.. so sorry to hear that you and your husband going through all this 

Attaching photos of my right hand ...this was how it was although sligh better now....do any of you think it could be this Vasculitus / cryoglobulinemia.?

i have found a lot of knowledge on this forum and the people on here are so helpful ....good luck with getting onto Eclupsa and getting off the steroids 

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.

He's only been on the Pred three days and he decided not to take it as of today.  I explained the weaning off but he felt that since he was only on it for three days it wasn't necessary.  He was taking two 20 mg per day.

He also started Gabapentin three days ago for the pain and it appears to be helping.  The pain isn't nearly as bad as it was @ 10 days ago so now it is mostly numbness and tingling.  He's getting physical therapy twice a week at home for the next three weeks.  

Spoke very briefly with gastro PA late yesterday and she said Pred is in fact contraindicated if taking Epclusa.  (Which confirmed what I found online) She's going to call both the neuro and rhumotologist docs to see if they are OK with delaying Pred until after Epcluse tx.  

I found the article on Medscape so no need to send it.  Thanks for everything!

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.

This seems to confirm my original thought that the HCV should be treated first and then the cyro may resolve itself.  Thanks again!

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

Cryoglobulinemia

This is a good reference I'd like to take to our doc appt Thursday.  Can you give me the citation info?  Thanks!

Thanks so much for the link.  It appears to be directed towards liver transplant recipients.  I assume you believe it would apply to those with HCV but who have not had a transplant.  I'll print it for our doc appt this Thursday.  

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.

Greetings and welcome to the Forum.

The prednisone is no doubt being prescribed to reduce inflammation. There are no known interactions between it and Epclusa. In that Prednisone is fairly common I would assume if an interaction existed it would be known.

I say this because even though new, Epclusa has a listing of 117 known interactions, 49 of which are major so it is a good idea to take all into consideration before starting Epclusa and being up on questions to ask.

Here is an interaction listing ~~>  https://www.drugs.com/drug-interactions/sofosbuvir-velpatasvir,epclusa.html

The gastro doc should be the most informed regarding interactions with Epclusa however his quickness to dismiss the symptoms from Hep C is a bit disturbing.

Once Epclusa is approved and you have a Specialty Pharmacy, that will be one of the most informed resources you will have regarding interactions and the treatment plan itself.

Prednisone will have an affect on the Auto Immune System and of course so does Hep C as the virus taxes the system. Your husbands body should be better prepared to deal with other issues once the Virus is arrested due to DAA treatment but as is the case with all things, it will take a little time and yes there will be discomfort during the battle.

The most important thing right now is to ensure Dr. A is aware of all Dr. B is doing and why. Ask questions and only accept those that display a knowledge in a genuine fashion. No room for "I don't knows" or "maybes".

Come here often with any questions none of which are dumb. Huge knowledge base here and we do love to dig up answers which generally are more refined questions to ask your Care Team.

Regards

JimmyK

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

Welcome kcastle - When I was diagnosed my hep doc said that some of the autoimmune issues can be connected to hep c. You would need to talk to your own doctor about your husbands case. 

Glad to hear that he is in the process of being approved for Epclusa! Tomorrow I will be starting my last month. Feeling pretty good. There are quite a few people here that are taking Epclusa. Check out Epclusers Corner and Club Zero. There are people who are experiencing different things, and it may be helpful to you. 

Keep in touch! 

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.

Hello, my 66 yo husband started having cramping, numbness and tingling in his legs that eventually went up to his thighs, his entire left arm and started on his right hand about the end of Sept.  He went to our primary doc Oct 4 and through blood work discovered he has Hep C.

Off to Gastro doc who said that cramping, numbness and tingling was not related to HepC and ordered more tests.  He said that once the insurance co approves it he'll start him on Epclusa.

In the meantime the numbness got worse and he wound up in the hospital for a week undergoing many more tests.  The neurologist dxed cryoglobulin vasculitis this last Friday, said it might be an autoimmune issue, prescribed prednisone and referring to rhumotologist.  

After I researched cryoglobulin it appears to be co-morbid with HepC afterall.  I don't think he should take the prednisone until we clear it with the gastro doc.  I'm thinking maybe his taking the Epclusa would clear up it up?

Help!