Author Topic: Skyrocketing Ferritin Level caused by Inflammation.  (Read 322 times)

Carolina

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Skyrocketing Ferritin Level caused by Inflammation.
« on: September 05, 2019, 05:37:15 AM »
Dearest Sjogren's Angels,

Another indication that I am in a new phase of my inflammatory disease is a suddenly sky rocketing Ferritin Level, found in routine blood tests in April, and July.

I saw a Hematologist yesterday because my Ferritin Level, usually 20, on a scale of 11-204 suddenly rose to 426 in April, and then 732 in July.

By the time of my appointment, my online research had convinced me that my high ferritin rate is the result of the sudden increase in inflammation in my entire body.

The hallmarks of inflammation are Profound Fatigue, total body Pain (Myalgia) and Depression.
In other words our experience in a FLARE.

The hematologist agreed with me, so now I MUST make an appointment with my Immunologist.

I finally began taking the 4 mg tablets of Medrol (methylprednisolone) that my Immunologist prescribes for me to 'stop' a Flare.   Except now I cannot 'stop' the flare, I have to keep taking the Medrol, or it returns immediately.

I am in a CONSTANT state of FLARE.   The fatigue and pain aren't the worst, the worst is the depression.  Well, the pain is pretty unbearable, too, since I have arthritis in almost every joint.  And the inflammation causes both joint and muscle pain, like the flu.

There are new biologicals that can target the cytokines that cause the inflammation (not autoantibodies in my case).  But they are outrageously expensive and mostly in clinical trials.

The Hematologist talked about Methotrexate and Plaquenil, but those drugs are like taking a hammer to my Immune System.  The biologicals target the specific biochemicals causing the inflammation.  But of course the biologicals also carry dangerous side effects.

I think I will probably just end up with a higher dose of Medrol, a maintenance dose.

But I need to see my Immunologist soon, because my Medrol is running out.

I took more yesterday, and feel so much better today.

I really have had enough!  Well, I guess I don't get to choose.

Regards, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

markt

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Re: Skyrocketing Ferritin Level caused by Inflammation.
« Reply #1 on: September 06, 2019, 07:01:17 AM »
"The hallmarks of inflammation are Profound Fatigue, total body Pain (Myalgia) and Depression.  In other words our experience in a FLARE."

Can't say that I have had one Flare since being on Rituxan for the last two years... what's more I have decent saliva due to reduced glandular infiltrate.  My eyes are still being managed via dry-eye contacts (Bandage Contact Lenses)? but are otherwise a mess.  No arthralgia or anything else like that.  I did stop Plaquenil with my Rheum's guidance, as it was causing skin hyperpigmentation (dark blotches) and no providing any discernable benefit for my clinical picture... and because I was already receiving Rituximab IV.

Rituximab for me has been great... sure, it's like making small car payment every 04 months... but I do it and I am just a Federal employee... not rich by any means.

From what I have seen myself and in my studies, it really is a must...  I hope you find a Rheum that is open to letting you try it.  It should be mandatory for Sjogrens (baring any confounding circumstances that would make it Unsafe).  It is generally well tolerated and SAFE.


Carolina

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Re: Skyrocketing Ferritin Level caused by Inflammation.
« Reply #2 on: September 06, 2019, 07:28:18 AM »
Dear Markt,

Unfortunately Rituximab causes  increased cytokine release.  Since my inflammatory condition is caused by cytokines, I'm not sure this would be a good thing.

I will ask my Immunologist about all of the biologicals.  They ARE, of course, very costly, as you well know, markt.

I already have IVIG every four weeks, which costs $14,000 per infusion.  I have had IVIG every four weeks since 2013, and will have it for life.  Thank goodness Medicare covers it, and my Supplement picks up the 20% copay.

I see my Immunologist on Tuesday..   My husband is an Immunologist who taught at a Medical School and did transplantation immunology research.  So he will be with me.

He went with me to see the Hematologist and was very helpful.

I'll ask specifically about Rituximab. 

Thanks, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

SjoGirl

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Re: Skyrocketing Ferritin Level caused by Inflammation.
« Reply #3 on: September 06, 2019, 10:46:43 AM »
Oh Elaine you have suffered so! I'm very sorry to hear about this. Like markt I've been blessed to be much improved overall, in my case thanks to Immuran. As you and others know, issues have cropped up here and there but so far I've avoided a major flare. It is my hope to avoid steroids at all costs but I understand that for many of us there are times when they are the only solution.

You will be in my prayers.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Deb 27

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Re: Skyrocketing Ferritin Level caused by Inflammation.
« Reply #4 on: September 07, 2019, 06:19:50 PM »
Elaine, I take it you've tried plaquenil before and had a bad reaction to it??  Usually, it does not suppress the immune system, but, of course we are all different. 

It's good that you can at least take prednisone, that sends my blood sugars through the roof. Not an option for me unless it's an emergency.

I hope your immunologist can find a solution for you to get you out of this flare.

Take care and keep us posted.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Carolina

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Re: Skyrocketing Ferritin Level caused by Inflammation.
« Reply #5 on: September 08, 2019, 07:35:22 AM »
Dear Deb,

Because I don't have autoantibodies (to speak of), I don't have autoimmune Sjogren's, but rather the same damage, but caused by other factors from my Immune System.

So, I've never had Plaquenil or Methotrexate, for example, because there didn't seem to be anything from my immune system to suppress.

Of course I've had lots of damage (neurological, primarily) to my body from something.  And my Immunologist suspects it is the activities of cytokines, not autoantibodies.

Now I am wondering, too, if it makes sense to suppress my Immune System.  My Immune System is also deficient in antibodies G and M, which is why I have IVIG every four weeks.

I have to talk about all of this with my Immunologist when I see her on Tuesday.

1) What is causing this huge spike in inflammation?

2) The inflammation causes pain, fatigue and depression, of course.  But is the cause something that can be dealt with? 

3) Can the cause be dealt with by suppression of my Immune System?  Plaquenil or Methotrexate?  Or would some biological that specifically targets the factor produced by my Immune System be better?  Does such a biological exist?  Would I qualify for the biological?

4) If nothing else I want more Methylprednisone to reduce the inflammation, since I just cannot function in a constant flare state.

It is interesting that you mentioned blood sugar.  Actually highly elevated Ferritin ALSO
elevates blood sugar.  And the statin drugs can elevate blood sugar, as well. 

So I have off the charts Ferritin levels and have taken 80 mg Lipitor for 20 years.  Recently my blood sugar is higher and this has worried my PCP.  I don't think it's the statin Lipitor since I've taken it so long without elevated blood sugar.  But then anything can happen, I've found.

Nothing motivates me the way this constant flare does.  It is relentless and it wears me down.  I've taken 4 mg of Medrol (methylprednisolone) for the past 5-6 days and am in much less pain.

But of course I'm running out of Medrol and must have another RX, regardless of the longer term plan, if there is one.  And my Immunologist hates giving me Medrol, I know.

The thing I never quite 'understand' is: does suppression of the Immune System stop damage by the Immune System?  And does it slow down or stop the progression of the underlying 'condition'/disease of the Immune System, ie. Lupus, Sjogren's, Hashimoto's, whatever?

The study I cite below notes that Plaquenil isn't any more effective than a placebo for dry eye, for example:

This systematic review showed that there is no significant difference between HCQ and placebo in the treatment of dry mouth and dry eye in pSS.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5427554/

What are we supposed to do, I wonder?

Elaine



Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

irish

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Re: Skyrocketing Ferritin Level caused by Inflammation.
« Reply #6 on: September 08, 2019, 11:39:25 PM »
I don't take the Plaquenil for my dry eye or my autoimmune disease. I take it because it basically decreases the inflammation and pain in my body. I don't have nearly as much pain as you do but when I don't take my Plaquenil for a few weeks then I start aching and at times my fatigue gets worse. I stop my plaque nil when I am on antibiotics as I noticed that I get "crazy" as I call it. More dizzy and sort of short in the brain department. Not terrible, but enough that I figured out what was causing it and I feel better when I stop it for a while.

One time I had terrible FERD and I noticed that when I took my  Plaquenil even with food, I would get such heartburn. I ended up stopping the Plaquenil for about 4 months to heal my gut and I was sure ready to start it up again.

Have you ever asked your doc about anything to slow the cytokine attack on your body. I used to know more about this as a friend had so many cytokine issues.....but my brain is failing me. Hope you can get some help. Is Prednisone less dangerous to take than the Medrol. I have only taken that in the 6 day taper packs for asthma attacks. Hope things improve. Irish

Carolina

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Re: Skyrocketing Ferritin Level caused by Inflammation.
« Reply #7 on: September 09, 2019, 05:58:44 AM »
Dear Irish,

VERY interesting information about Plaquenil as an inflammatory re: inflammation caused by your Immune Disorder!

I see my Immunologist tomorrow and will raise the issue.  I didn't know if prednisone is safer than methylprednisolone, so I'll discuss that as well.

Yesterday, as I was getting ready for bed, I realized that the worst of my pain, fatigue and depression had abated.  This is after about 5 continuous days  of 4 mg Medrol.   It abated slowly  rather than the usual 'dramatic' results I get from steroid treatment. 

But then, for example, when I was treated for Pneumonia in early July, the taper started with 60 mg prednisone, l then dropped by 10 mg every day for 6 days. Big difference from taking 4 mg Medrol every day for 5-6 days .

Since my Ferritin was over 400 in April and over 700 in July, AND assume this is due to inflammation, I  don't know if a brief round of Medrol truly can interrupt the level of constant inflammation I've been experiencing.  My Ferritin was always 20.

I'm just making connections and assumptions right and left, Irish.  But what else can I do?  And John is a research immunologist, not a medical doctor, so he understands as much as he can, but can't run tests and has no clinical experience.

It will be interesting to talk with my Immunologist.

Elaine

PS  I know the sense of 'brain power' fading....I'm 77 and find myself 'searching' for what I think used to be easier information.  Alas.
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irish

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Re: Skyrocketing Ferritin Level caused by Inflammation.
« Reply #8 on: September 09, 2019, 12:34:38 PM »
I don't know that it makes any difference what our inflammation is from when it comes to the Plaquenil. Plaquenil was used to treat Malaria years ago (maybe it still is) as it is an anti parasitic drug. People noted that when they hard Rheumatoid arthritis and were on Plaquenil their aching decreased. This is when they started using it for the RA pain. Then as years went by the docs started using it for people with lupus who had inflammatory pain.

It is a better drug and a safer drug than people think. My opinion. My DIL who is optometrist said that the ophthalmologist and optometrist use it a lot...but they need to know the correct way to ascertain the eye symptoms that are a side effect of the Plaquenil. She learned at conventions that many times docs will stop the med as they think eye symptoms are from plaque nil when , in fact, they are suffering from an eye issue that is similar but not the same as the side effect from Plaquenil. I should ask her what the name of this eye issue is. I get my eyes checked big time once a year. My appt is fairly lengthy , eye scans, other testing and several tests by eye doctor. The scans are so interesting as you can see the retina, etc and all the other parts of the eye. Good luck. Irish