Hep C Discussion Forum

Jaggles · Senior Member

RE: High iron now...ready to flip out...help

Jaggles · Senior Member

Thanks observer, ....Im hoping to see my iron levels have dropped thursday when I see GP. The system sucks...I'm ready to explode if THIS weeks phone call doesn't come....they really don't know how awful living with this can be. I had no idea it would develop like this and so quickly...thanks for pulling for me buddy ...knew I could count on you guys xxx

Canuck · Guru

Hi Jaggles,

Good you are feeling not quite as "out of sorts" as earlier.

In the 2 weeks you have been dosing, that is a VERY modest regime he gave you, and, in a self-imposed way you have been dosing even less, thus maybe why you have not been getting the full benefit/relief. I understand your preference to underdose, but ... on the other hand, the whole idea was to glean some physical pain relief, no?

I would be experimenting with full oramorph doses as prescribed (which are not large amounts by the way) - like, if night is the worst then make sure your nighttime dose IS closer to what was suggested. Over these last 2 weeks, if you have not been "stoned" or "overly sedated" on the oramorph AND you are still in pain, I think you could well be underdosing. Use your 6th sense, and/or, ask your nurse or doc. The only real benefit you mentioned thus far was that the morphine made you sleep a wee bit better? You could be not taking a large enough effective dose for pain control.

A common adult "injection" dose of morphine for bad pain is 10 mg. (or more!). Given that mg. for mg. injectible morphine is roughly about 3 times as effective as oral morphine, it means that one equivelent oral dose would have to be around 30 mg to derive the same amount of pain relieving morphine as found in a 10 mg injection.

Your oramorph is probably 10 mg per 5 ml. (check the label) - if so, then by taking only 2 ml you are only getting a 4 mg dose of morphine - that is a pretty small dose (like an injection of less than 1.5 mg!).

By taking one full dose dose of the oramorph (5 ml), the 10 mg of morphine you are getting from it is only the equivelent of a less than 3.5 mg by injection.

Even if you took the maximum amounts of oramorph your doc said to take per day (5 ml 3 times a day) you are still only getting a maximum total amount of 30 mg of morphine for the whole day total (based on 5 ml = 10 mg) - 30 mg ormorph per day is roughly equal to getting 10 mg per day via injection.

I understand the concept of adding non-narcotic OTC analgesia to augment pain control with morphine, but (1) paracetemol (or tylenol) is really not a very good anti-inflammatory, there are other drugs (NSAIDs) that can be added to morphine that also help to kill pain (just like tylenol kills pain) but also offer anti-inflammatory benefits which might be even more helpful than tylenol given your complaints of "joint" and "bone" pain, and, (2) the idea of 8 tylenol per day makes me cringe! (I have less trouble with the full dosing of oramorph, augmented by minimal dosings of NSAIDs!) On my best liver day I would never be wanting to do more than 500 mg of tylenol 3 times per day, if ever that much, but that just me, and it does depend on whether the idea that you need anti-inflammatries is important. Regardless, there is no getting around it, all of these drugs are hard on the stomache, guts and liver.

See what you can figure out for yourself as far as types, combos, and the amounts of drugs you NEED for better pain control. I think you may have been underdosing.

Don't know for sure, but skim, 2% or whole milk all has the same amt. of calcium in it, doesn't it?, so, "maybe" a big glass of milk has enough calcium in it to support this "theory" that calcium (when taken with a iron laden meal) will compete with the iron for absorption - not sure, but that's some of the reading "out there". In general, dietary iron reductions and NOT eating Vit C with any iron laden meal, seems important - as Vit C enhances iron absorbtion.

Now, on to one of our other favourite topics, stools!! wink hee hee . From pure glistening pearly stark white ones to rock hard pebbles and nuggets, I am glad we are free enough to discuss all. eww, what i said! smile C.

Jaggles · Senior Member

Thanks observer, ....Im hoping to see my iron levels have dropped thursday when I see GP. The system sucks...I'm ready to explode if THIS weeks phone call doesn't come....they really don't know how awful living with this can be. I had no idea it would develop like this and so quickly...thanks for pulling for me buddy ...knew I could count on you guys xxx

Jaggles · Senior Member

Thanks for the links Tig...very helpful...I also got to see Max and SaMartha May in the video,...nice to see faces as I have spoken with them both often. Sam has been a great support to me since diagnosis...as have you all....roll on another week...I'm so close xx

Jaggles · Senior Member

Hiya Canuck , well...I've been on the morphine the past two weeks and told by Hep nurse to combine with 2 paracetamol up to 8 per day . For the morphine my gp told me to take 2.5 ml to 5ml 3 times per day maximum 15 MLS. I'm bit wary of any opiates so been taking 2 ml with 1 paracetamol....only one dose am and 1 at night. I cease up and it hurts so much it wakes me up. Bones, joints and muscle pain. . the morphine is helping me sleep.

keeping bowls regular never been problem as I do eat a well balanced diet and drink lots water and ginger teas....although since morphine it's been a bit nut like lol.....I have now cut out red meat altogether but to be honest never eat lots of red meat. Now only chicken, turkey and some fish. I think the trouble with my healthy diet there iron in healthy foods but I needed half skimmed milk , just 1 glass gives enough calcium to prevent the heme being absorbed? So I was on skimmed milk...now I have my porridge every morning with semi, making adjustments when I can and always looking for ways to improve diet. I've quit smoking...that has been tough at times but I'm ok with it.

im not sure what was going on with bloods and feretin but will ask next week when I see gp again. The last gp was a locum but she showed me a screen with big warning cross in red by my iron levels...I don't really know what I'm looking for until I come on here lol...so now, I will ask ....I'm hoping to get the call next week..gotta get this beast out of my body...

i was very down this morning but feeling more positive ....thanks again Canuck ....I need sleep now xxx

Tig · Admin

Hey Jags,

Bummer! We don't like to hear anyone is having these struggles, but I'm confident that you're going to succeed at all you do. I know these things are difficult, but please allow me to tell you that a positive attitude means so much. I have witnessed so many suffer with this and it's a heart breaker to see. I wish I could share my optimism with you. I know you're going to beat this, just do your best to cast aside the fear and doubt. Difficult, yes, impossible NO. Don't allow these obstacles to deter you. Your path to the cure is there and the gate to treatment is going to open. You just keep knocking on that door!

Have you contacted any of the UK advocacy programs? Let me add a couple of groups, just in case you haven't.

HepCPositive UK

HepCTrust-Support

HepCTrust-Helpline

Canuck · Guru

Hey Jaggles,

Sorry your having such a tough time. Understandable.

Sorry, I always have questions for you, don't I?! ... it would help a bit if you opened in the same thread all the time, then I could just easily look at your last posts and look things up myself, instead of having to search for info in past previous posts, or end up having to quiz you all over again about things - so bear with me - I'm trying to recall HOW long (when) you started taking the oramorph (it does not seem like it was that long ago that you were finally offered something for your body pain. So, when did you start taking it, at what dosage and how many times a day was it recommended, and did you take it just like prescribed?

Pain is pain and when it needs to be dealt with it is justfied by any means, including drugs, but I have never been enamoured of narcotics period IF they can be avoided, they come with their own sides, I'm actually not really enamoured of ANY drugs that the poor ole liver has to deal with addtionally, but pain is what pain is, and suffering should be alleviated.

I am glad you and your doc gave this a try. I think you said (previously) your OTC ibuprofen was not helping? So, other than ibuprofen (and now oramorph) was there anything else that you tried, or that was discussed or suggested to you as an alternate pain killer by your docs?

Did the oramorph (we knew the frequencies/dosages and IF it was taken as directed) help at all, even one iota, maybe just at first, but is now not working?? Or did it really not help at all, right from day one. You may need to bump heads with them again about the drugs not killing your pain, and see what else you and your doc can come up with, perhaps another drug choice, or a dosage/frequency chnage, or even an added drug with may potentiate the oramorph. You need to give feedback to the doc.

I'm not surprized to hear you speak of nausea with oramorph , sometimes docs will tell you to take a prescribed anti-nausea drug with it, in the beginning, to combat this. Your body very quickly can get used to morphine, thus the nausea will let up, and it may soon "not keep up" to kill the pain. I personally believe morphine is not well absorbed via the GI tract, so oral narcotics like these need to be carefully gauged. I have known a few folk who found oral morphine not all that helpful, and had more sides than pain control!

The other trouble is how hard it is on your stomache and gut, generally. It WILL screw up gastic motility bigtime, another side I hope they told you about or that you were already well aware of, and that you already KNEW to be VERY proactive in keeping your bowels open from day one and during this time while on it!! Tons of water, fibre, fruit!!

If after brain bumping with your doc, you find it oramorph is NOT working for you, then try, try again. Maybe ask what you can add to the oramorph to boost the analagesia (but you should not be on oramorph for very long term anyway), or, you and your doc could decide to drop it entirely and switch over to try something else entirely, non-narcotic, ask about any of the NSAIDs - Naproxen, Ibuprophen, Diclofenac (as I mentioned previously) I have always been partial to those "prostaglandin ones" like Ponstan or mefenamic acid - but, that's jsut what I have found, could be all duds for the next guy! All of these are not really gut or liver friendly either!

What do you mean "high" iron? What are your hemoglobin levels from your labs? Is there a ferritin level in your labs. Is there a TIBC result in your labs?

I would eat a nutricious diet, with no red meats, or any high iron content foods in general, just white meat and sub other proteins for any red meat you may be missing for protein. "Heme" iron (from red meats) you cannot avoid absorbing once you have ingested it. (Apparently you already have more than enough in your system, and don't need anymore added to it for the moment!) The lesser amounts of iron that one can derive from ingesting "plant" sources" in their diet on the other hand can be slightly affected from being completely absorbed by (1) not consuming any iron containing food at the same time as you eating Vit C. C enhances absorbtion of iron. (2) Calcium, manganese, zinc I have heard compete for absorbtion over iron when consumed in the same meal that contains iron. (3) Fibre, such as red rice bran and some other kinds of "phytates" found in certain fibres/brans/nuts/seed/grains (I forget them) they "say" may also be helpful to decrease plant based iron absorbtion.

My iron load decreased after my cure, so did Shadowfax's. No idea if any of my attempted dietary interventions helped one iota to decrease my iron, all I know is that is did come down, maybe nothing to do with what things I tried, it was very consistantly up prior to tretament, no ferritin draws were done after that for quite a while, shortly after tretament I asked for them to re-drawn, twice, and lo and behold, nice and normal x2 now.

oops, Gotta go. Later. Sorry for yoru troubles. C.

Observer · Guru

Yes high iron is related to hepC. bleh

Before I was diagnosed,I always had super high iron, but I thought it was a good thing (because so many women/girls have to take iron supplements) and was from eating seaweed (with sushi). After diagnosis, I learned about the bad side of having high iron...main cause of brain fog I think. Gave up sushi, spinach.......didn't really lower my iron much.

I am so so so sorry that the stupid bureaucracy is being so bloody slow and stupid with your case. furious It makes me angry too.

I started the process of asking for treatment in March and didn't get the meds until September, I have chirrosis, was an F4.

That was a tough 7 months.

Its like unless they've experienced it, people just don't understand how awful it is to live even a day or a week with a non functioning liver.

Dont be too hard on yourself about your mood...the liver controls so much...hormones included.

You have every right to be pi**ed off, having this virus is awful, makes you feel awful.

Best of luck with getting your meds, my friend Jaggles

I'll be pulling for you

A

Jaggles · Senior Member

my doctor has put me on ora morph for my joint pain and been checking my bloods each fortnight to makemsure my liver coping, she pointed out my levels of iron are really high and told me to research foods to eliminate. so....I had no idea it was connected to Hep c.

my case was supposed to go to treatment panel last week but they never called me so Friday I call them to be told 'they didn't have time to discuss my casebut they will either next week or the week after.

so I'm at the end of next week...and hoping next week now will bring me a call inviting me in ...I am so low right now. The ora morph doesn't really help with pain much and just makes me nauseous. My mood is low and I am so angry all the time. I'm finding it difficult to work and really don't want to get signed off...finding it really hard to walk my dogs...which helps my mood...

also got response from my MP and the secretary of health the right honourable Jeremy hunt....what a waste of paper!!! All they did was tell me what I already knew and didn't answer my question at all....im so angry I hate the world today...praying for next week, every week....constantly worrying about diet and pain managemnt ...lack of sleep and being able to get out of bed each day...I know there are people worse than me and suffering more but right now I feel like crap just want to get started. They said that when it goes to panel I WILL get treatment but it will take weeks as they have to get the drugs sent to me? Is that standard for epclusa in U.K.? Or are they getting sent in from the same source I could have brought them? But they wouldn't monitor me disbelief ok rant over...I need a shower...is it normal to sweat this much and not dissolve ? so sorry but today I need some love from the Hep family cause mine have become used to me being ill...so used to it they never ask how I feel anymore ....I think they probably hope the drugs work and pray I get treated soon but we never talk about it. It's like a swear word or a bad smell if I start talking about how I feel.

ok....shower now.....sorry xx

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