I had an echo of my heart done yesterday. It shows mild to moderate tricuspid regurgitation with mild to moderate pulmonary hypertension. I was dx with Raynaud's about 2 weeks ago and that may be the cause of the pulmonary hypertension. I think the Raynaud's came from the cryo. I think it is more life threatening than HVC - there is no cure. But, will I still be able to go thru the tx for HVC with pulmonary hypertension. Oh, my God, things keep getting worse. I don't think I can handle much more. I'm really sad. Does anyone here know any correlation and/or would tx for HVC still be appropriate. I see
an infectious disease doc tomorrow for the first time and Mon. a hepatologist for the first time. I'm grade one, stage 0, genotype 2b, VL 12 million, positive rheumatoid factor and have cryo symptoms. Probably get the cryocrit tomorrow. Please, give me any thoughts you may have. Thank you, Dianne
a lot has been placed on your plate, that's for sure! now, you have to find strength that you feel you don't have in order to deal with everything that is coming your way. I hope you have some support from family and friends to help you through. You might be correct in your theory that it is hcv related, and the condition is worse than hep c in the sense that the liver is not damage, but the condition itself IS hep c, what is termed extrahepatic conditions. You do not have to be in advanced liver disease to get serious conditions from this virus, I hope people can learn that from your case. The Raynaud and cryo has also been found in hep b infected, here is a look at others with similar situation as yours
and more on Raynaud's phenomenom
Find out what type of cryo you have, when they test you. Tx for hep c will take care of the cryo that is hep c related.
pulmonary hypertension is one reason a member here had to stop tx, but I remember another did tx, with very close monitoring. You need a really good team on your side. what state are you in?
perhaps close monitoring can happen better in a trial setting? here is a great site for searching
and this one interest me, I might contact them for it:
here is one on cryoglobulinemia
this one says is still recruiting in Canada
breath test of fibrosis?
depression markers for interferon
take a peek, when you get the chance and have the energy.
Dianne, you need to find out what is the cause of the pulmonary hypertension. If you treat the pulmonary hypertension, the tricuspid valve will not be stressed as much. Raynauds didn't cause anything. Raynauds is not a disease, it's a syndrome. It may (more then likely) be associated with cryo, but doesn't have to be. Put on warm socks and gloves in the winter, keep your feet and fingers warm by any means, and otherwise forget about Raynauds, it's a very minor issue. Forget about Rheumatoid factor as well, it comes with type 2 cryo, which you probably have, and more then likely will always remain pos, even if you SVR. Too long to go in to the dynamics of it, but believe me, it's nothing you can do about it.
I never advocate watch and wait, regardless the stage, but in your case, you might consider consulting with a pulmonary specialist and a cardiologist first. Tricuspid regugitation, with no underlying aggrevation, can remain stable for long periods of time.If pulmonary hypertension continous unchecked, tricuspid will get worse. Worse means more floppy, doesn't close properly, and ultimately needs replacement.
I don't know what you consider cryo symptoms, most people with cryo have no symptoms. Maybe you posted them before, but I can't recall.
You don't know what type you are, who told you that your symptoms are cryo related?
Cryocrit does not tell you what type you are, only gives you a % of the amount of cryo you have today. It fluctulates, often with the viral load.
Hope your symptoms are hepc related, and not cryo related.
You have a full plate, a cool head is needed to tackle one problem at a time.
I appreciate all of your comments and especially all the links. I have been reading them but have not gotten very far. Cuteus suggested having a good team to work with. I plan to go to St.Louis University for care and hopefully that will be co-ordinated with a pulmonologist and cardiologist. The Dr. I'm going to see is Dr Tetri and he will be consulting Dr. Bruce Bacon. I understand Dr. Bacon treated Naomi Judd. Anyway, Dr. Bacon is a friend of my Internal Med Dr. here in town whom I just recently started seeing but I couldn't see Dr. Bacon because he is sick. I live 2 hrs from St. Louis. The cryo symptoms Im having are: palmar erythema (hypothenar eminence) right medial hand below little finger large area stayed very red, swollen and painful noticed it especially after a 2 or 3 month period where both hands were red and stayed swollen. My little fingers felt like someone was trying to dislocate them. Once the swelling went away my knuckles under the little fingers on bilat hand were so big that it spread my little fingers away from the others about an inch - then left this red swollen, painful area - could not write or shift gears. Porphyria cutanea tarda - bilat medial (inside) ankle area. First looked like a brown recluse bite - Large purple, brown area then formed hard blisters (no fluid) that had a thick scab - were not painful but looked strange. Then they scarred down - 2 on the left and one is still there looks like an ulcer about the size of a dime now. Spider angiomata right lower abdomen area about 7" X 4". The nevi are diffent than the spider veins or telangiectasias on my legs. These have a dot in the middle and spread out. Then, bilat arms and back have these mosquito bite type lesions - small, scattered, itch and scab - take a while for them to go away. Chronic joint pain, stiffness, hands, feet, ankles, wrists, now elbow at times associated with fatique and mood changes. My feet feel real tight. Can't walk in the morning, open the milk or pour coffee at times worse than others. Transient numbness and tingling in hands, feet and lips. Night Sweats - all night but freezing in the day time. Frequent migraines with severe nausea and vomitting if I wake up with it. Lots of swelling ankles, feet and hands. Also, dx about month ago with blepharochalasis upper eye lids - swelled nearly shut, they were creased in the middle of the lid, fat pads protruding, with associated telangiectasias. Using steroid cream now - helped a lot. Frequent right and left upper quad pain, left kidney pain, dark urine at times, and itching. All of this comes and goes. I thought I was having symptoms of portal hypertension but when bx came back stage 0, I started looking at what else. Posted some and got back possibly cryo especially RF pos. Rheumy ruled out rheumatoid arthritis - dx with fibromyalgia. Internal med doc dx Raynauds, had purplish feet, this weekend face white and lips white felt bad. I gave him some info on Cryo he talked to Dr. Bacon and together they decided I had some of the symptoms will test when I see Dr. Tetri. Also, when I lay down chest heavy, I have to get up - and throat gurgling sounds. The last dr. blew it off - I thought the heavy feeling was stress now I know it and the gurgling is from the portal hypertension. I thought maybe the Raynauds caused the fibrous scarring inside the lumen of the portal artery since everything I have read today somehow it is related to the pullmonary hypertension. I know all these symptoms are not cryo related but this is most of the stuff that's going on. I think I have had symptoms for 12 yrs - but the bad episodes were not frequent until this spring - they just kept getting worse and more bizarre. Most recent is spastic colon - have not had that for eight years. My MD kept blowing everything off, hence a new one and he is good. Sorry, this is so much info. Thanks for your response. Sincerely, Dianne
Try not to get too freaked out. It sounds like you have minimal liver damage and that is a good thing!
Your new diagnosis of pulmonary hypertension sounds very scary I know, but it is "high blood pressure" which millions are able to successfully control with proper diet and in some cases medications and you will get yours under control too.Anxiety and stress are BIG contributors to high blood pressure. As was pointed out to you by Eisbein, Raynauds is a "syndrome" not a disease, please take her advice.
I'd speak to your doctor or consult with a cardiologist about it to ease your fears. Hopefully you can find someone you TRUST which will be hard after what you have been through I know.
Even good result reports can be scary for patients to read.
I know your trust level for doctors is now in the dirt due to you being misled for so long and now realizing they weren't
"caring" for you properly and that alone is frightening. You put yourself in their hands to insure you maintain your good health only to find out later they missed key factors.
I think you need some clarity from a doctor or specialist you DO trust to lessen your fears. Please try to get past having been mistreated and undertreated by your previous doctor, you have to move forward or the anxiety and stress it is causing will just negatively affect your health even more .
The last thing you need is this high level of stress and lack of sleep, both of those things just increase your issues and definately can make your blood pressure GO UP! Anxiety adds to these problems.
I hope you now have a doctor you do trust, please speak to him and have him go over all of your worries and make a game plan to resolve/control these problems for you.
I can feel your frustration and anger, I too trusted a doctor who was not caring for me properly ( unbeknownst to me) and failed to diagnose me correctly or care for me correctly, I trusted him and his lack of care almost did me in so I can relate to how hard it is after an experience like that to trust ANY doctor again but you must find one you can trust and let him/her help you.
hang in there.
This is just a comment on my previous note in the areas that I said portal hypertension I meant pulmonary hypertension except in the begining when I thought the symptoms were from portal hypertension but I did not have cirrhosis. Anyway, I stll think I have some portal hypertension even though Im a stage 0. Don't really know for sure if this is possible but the tech who did the 2d echo said she thought so too. It has not yet been evaluated by a radiologist. So, now I may have portal and pulmonary hypertension what a joke. I could almost laugh. Also, the abnormals on the echo were Lipomatous hypertrophy of the interatrial septum, trivial to mild mitral regurg, dilated IVC with decreased inspiratory collapse suggesting elevated right atrial pressures, mild to moderate tricuspid regurg with mild to moderate pulmonary hypertension, PASP of 47 mmHg (assuming a right atria pressure of 15 mmHg). I don't know what all this means but I have been up most of the night. I have learned a lot in the last 3 weeks but there is so, so much more to figure out. The girls at work tell me to stay off the internet. If that were the case, I would still be seeing the old Dr. just as I had for 10 yrs and would have died from congested heart failure. Never again will I put my faith in some one else to make the decisions for my health unless it is to my Lord, Almighty. Thanks again.
You must have misunderstood something, or I am loosing my memory.
Diane never mentioned systemic hypertension, she has pulmonary hypertension.
She needs to establish if it's primary, or secondary, find the cause and eliminate it if possible, in order to prevent further right sided heart involvement.
You are advising good diet, and antihypertensives, which won't do squat for her.
Pulmonary hypertension is self perpetuating and difficult to treat, regardless the cause.
Diane, you wrote a mouthful. I am very sorry, but nothing seems to fit entirely with some of the diagnosises you assign yourself.
Did you actually get a diagnosis of PCT?
Porpyuria cutanea tarda are painless blistering and fragility of the dorsal surfaces of the hands, and facial hyperpimentation, brought on by sun exposure. Since yours are gone now, the only way to establish a diagnosis of PCT, is testing for urinary uroporphyrins. PCT can be hepc associated or also drug induced. The urinary test would show the difference.
You leg stuff can be cryo, but doesn't have to be.
How high was your rheumatoid factor? Mine was around 150 for as long as I can remember. Now its around 45...got rid of cryo and hcv, hopefully for good, but pos RF is here to stay, and very well may go up again.
You don't have a diagnosis of cryo yet, and maybe you don't have it, because other things can cause an elevated RF too.
You keep saying portal hypertension, but you are stage o...not possible, unless something else is operating, like a liver tumor, pressing on surrounding tissues and obstructing blood flow.
Make sure they measure your spleen size from the ultrasound.
An abdominal cat scan is more definitive.
That ultrasound tech should not have made such comments, she/he is a tech, thats it, and comments like that cause undue anxiety.
You may want to have your biopsy slides re-evaluated by another pathologist, to make sure you are really stage 0.
Forget about that thing on your eye, those are usually one time infections.
With all this coming at you, you may want to consider an anti anxiety drug.
I am sorry I can not be of more help, but there are too many issues going on at the same time.
Thanks so much for your comments - they all have been quite insightful. Kailo, you hit it on the nail regarding frustration one feels when they have been misdiagnosed or even at that not taken the time to even dx. Your empathy was reassuring because, yes, I have found a doc I can trust. Also, I have a wonderful support system. Thanks, again.
Cuteus, I don't know what kind of Raynauds it is yet. I'm going to the specialists on Monday and maybe they can tell me more. And, thank you for the links they are all good ones. I have been printing a lot of the info for my family.
Ina, I know nothing seems to fit regarding dx yet but soon I will have the answers thru testing. About 3 weeks ago, I knew nothing about extrahepatic conditions and little about HCV. The past 8 yrs, I thought I had a particular type of RA that was limited to just my hands and blew everything off as that because that's what an incompetent rheumy told me. He even said, no need to come back. At that time, my RF was 94. This time, they did a RA titer 1:16 not sure what the value means. I plan to get tested for the PCT and cryo and going to ask for abdominal CT on Mon. Thanks for the adivice on the spleen measurements. 3 yrs ago, when I was having a period of illness, similar to now but not as severe, I had brown spots on my lower arms, skin integrity was poor - would bruise or bleed at the slightest thing. The dr. I worked for ran a liver panel an the ALK Phos was the only elevation. He didn't know what to think and I thought it was from taking advil or steroid injection for sinus infection. Didn't think of that until now. The skin on my arms is still thin but seems like the integrity has improved. Anyway, the blisters on the medial sides of ankles were sun exposed areas due to the fact that I'm a gardner and wear sandals and crop pants. I have a large brown spot on my right cheek - tried to remove with laser - just keeps getting larger but I don't think that is related. I thought the spider angiomatas on right lower abdomen were signs of portal hypertension and the new dr told me they were but he is not a hepatologist. He is going to have the slides of bx sent to St. Louis. Also, he did not say what kind of Raynauds. Hopefully, they can find out what's causing the pulmonary hypertension. Normal b/p is 100/60. About a month ago, it was around 180/90, when I had an episode of numbness bilat hands, feet, tongue and lips - it started going up my arms and legs - tasted metal- and light headed - went to ER lasted a couple hours then went away - they thought it was from the steroid the dr gave me weeks before for arthragia symptoms. At that time, the only abnormals were TSH .249, CK 161, K 3.1, T bili 1.1 which were not that abnormal. Then 2 weeks ago, after liver bx, had near syncopal episode only lips numb, light headed then confused, HR 120, b/p kept going up and down, limbs weak, very thirsty - lasted couple hours. No idea why this happened. Sounds like I'm a wreck but thru the past 12 yrs I have had only "episodes" not this bad. Normally, I have high energy, except I noticed this summer less endurance, look good for 53, take vitamins - don't drink except for a holiday once or twice a yr or take drugs. Have controlled pain with advil until recently was given vicoprofen which has helped tremendously. Looking forward to Monday - hope I can get some answers. Thanks again, Ina for all your help.
Drofi, I have to look at your link it sounds interesting. Thanks!
That large brown spot on your cheeks could be a hint you have PCT. Get that urine test for porphyria. You do know that tetracyline and non steroidal anti-inflammatories can cause PCT.
We cryo people have abnormal immune reponses, all genetics.
Just want to mention, that we expirience tx no different than those without cryo, but I must warn you, on very rare occasions, people with symptomatic cryo have gotten worse while on tx. I mean their cryo. Twotells was one of them. He is SVR now, because he had exellent doctors, and pursued a very unconventional tx approach.
I had almost 18 years ago an RA titer done, I think it came back the same as yours, and after that only rheumatoid factors.
Beats me about the titer, because a titer usually refers to the concentration of antibodies in the blood. I think they do a titer to rule out Rheumatoid arthritis, which is an autoimmune disease, which means we are making antiboties against our own joints. The RF on the other hand can be just there, doing nothing. I am not sure if I made that clear.
BTW, in our case, a pos RF represents a permanent alteration of the immune system...at least that is what the scientists are saying...and I never read that it would do us harm in the future.
You TSH is a touch low. You want to keep an eye on it, because you could be on the verge of becoming hyperthyroid.
You did a lot of abbreviating, and I am retired for some time, and can't remember what they mean.
Apropos that near fainting episode... the Systolic B/P rises high, yours was 180, which means the heart is pumping furiously to bring blood to the brain to avoid fainting. Dehydration can do that too.
Yes, finding the cause of the pulmonary hypertension is priority.
Unfortunately sometimes it's genetic, which complicates the picture.
Try to avoid any cortisone shots in the future, I mean if at all possible. That lowers your immune responses, and you still have HCV lurking in the background.
If you are stage 0, your Albumin should be normal, your Pro-time should not be prolonged, and your bilirubin should be normal also. Those are the true liver function tests.
Also your platelets should be normal, which would indicate that the blood flow through the liver is not compromised. If the flow is compromised, they would hang out in the spleen, and the spleen would start getting enlarged.
I am just rambling here, and I am very, very sorry that you have to carry this load on top of the HCV.
Please give the anti-anxiety drugs a thought.
Diane, if you write, would you please try to use paragraphs, that would make it much easier to read.
I was hoping you would get involved with this very complicated case! I know you have limited computer time, but, because I was hoping you would see this, I tried my best to keep 'see me' around with the little I know. I knew if anyone could direct this path it was crossing guard Ina. The HTN comment confused me too, I am glad you clarified that one. I did not think they were the same thing, but was not sure.
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