Categories Blog Health Personal

Iron Infusion

I was given the iron infusion yesterday 😀 It went well, no allergic reaction or anything! The only problem was the nurse had trouble finding a vein (which has been happening more and more for the last year) and the first vein she did find “broke”. It took her a little over 15 minutes to find a vein that worked, at the back of my right hand. But then it all went well! The infusion itself took 35 minutes, and after I had to stay in for observation for half an hour… the whole thing took 1,5 hours all in all.

Now I’m just waiting to see what effect the iron infusion has one – so far no change in head ache, exhaustion or anything else. But the nurse did say that it might take a couple of days before I’ll feel any change, and I’ve also read many, many accounts of other people’s experiences and know that there might a big change, a little change or no change at all. And that things like fever, even worse exhaustion and headache are all possible in addition to good changes while the body processes the wow, there’s suddenly lots of iron! I also know that many people have also needed more than one infusion because their iron deficency is so deep and has lasted a long time (years/decades). So I’m watching with an open mind and cautious optimism 🙂 

Categories Blog Health Personal

Health Update – Iron Infusion!

Image from Pixabay.

Had my yearly check-up with my gastroenterologist yesterday, and he finally decided, after personally following my struggle with iron deficiency for about three years, that an an iron infusion is indicated in my case, even though technically I don’t fulfill the requirements of VSSHP (my hospital region) My hemoglobin is ok right now (six months ago I had anemia), but my iron is currently 38  (30 is empty/no iron in cells at all so 38 is really bad) and it took me over a year to get get to that from 9 (normal rate is 5-10 a month with oral supplements, if it worked like it should, it’d be 60 at minimun. And it keeps plummeting immediately if I pause the supplements). I’ve been hoping for an iron infusion for at least five years!

IBD patients are recommended to have at least 100 even in literature, but talking to other Crohn’s patients here, it’s like that ruling doesn’t exist and majority seem to have levels between 2-50 and doctors say it’s okay and normal 😐  It’s also notable that practically every one of these patients I’ve talked to is a woman – there’s been like 2 men, and dozens of women.

I’ve personally been struggling with low iron/hemoglobin levels for 20 years now… and probably long before because I would faint/almost faint during my period despite not having that much pain, and my periods used to be heavy, but I didn’t know anything about anemia or iron deficiency until 20 years ago when I first had to take an oral iron supplement for more than a year because of iron deficiency. Then after, I kept having to take courses of them every year, and still my hemoglobin would plummet. I was even admitted into hospital in 2008 because my hemoglobin was dangerously low (the nurse who called the lab results said that I must to come to the hospital right now at 8pm, because if I got into an accident I might bleed to death just because my hemoglobin was so bad). That hospital trip is the time from which all my health problems started one by one.

Iron deficiency is a very controversial medical issue here, with general consensus among doctors basically being that it doesn’t matter, only anemia matters. Only  a few doctors think good iron levels are important in general, and even fewer think that good iron levels are possible for IBD patients, and if necessary,  to treat IBD patients with infusions regularly if they are not. To tell the truth, I’m not even sure my gastroenterologists would have paid as much attention to my iron levels if I didn’t always bring it up with them in each yearly check-up and complain about the exhaustion, headaches, brain fog etc. So now that I’m going to get an iron infusion “to see what it does” and “if your levels get better/stay up”, I feel like I’ve won a small battle! He said that it’s going to be a small infusion (which I guess is better for in case there’s side effects, but may not be enough if the iron deficiency is serious and/or has continued for years). But small is better than none, so I’m happy! And very curious if it’ll do anything to my daily background headache.

Otherwise, other labs are mostly okay – AFOS is a tiny bit elevated and needs to be followed to see how it develops, but he said there’s no reason for alarm yet.  ALAT and AFOS (both labs are to do with the liver) are checked every three months anyway, and we’ll keep doing that. ALAT has been acting weirdly the last year or so – it used to be elevated (but tolerated because of the meds I’m on) but suddenly the last year it’s been anything from 25 to 72. So it’s been going up and down a lot. He couldn’t really explain it. Just that if AFOS stays elevated, then MRI needs to be done because liver related diseases are relatively common in IBD patients.

But the really big thing yesterday was the iron infusion news 😀 They should send the invitation letter for the infusion inside the month. I’m happy and excited and also a little anxious because anaphylactic shock is always possible… but mostly I’m excited! This has the possibility to improve my quality of life a lot, if it helps with the exhaustion!

Oh, and wanted also to mention – I only had two actual migraine attacks in February! Ajovy does seem to be working!!! 😀 

Categories Blog Health Memes & Asks Personal

The Friday Five for February 18, 2022

Answers to yesterday’s questions at https://thefridayfive.livejournal.com/200499.html

1. Do you have Spring or Fall allergies?

I have some sort of food allergies and an atopic skin condition but nothing that is only seasonal. It’s always been year around thing.

2. Do you have something in particular that you are allergic to or is it just general?

My allergies used to triggered/worsened by certain foods (citrus fruit, chocolate etc.) but even when I avoided them, I always had rashes on my arms and legs year round. The rash would get better during summer as long as I got to swim in the ocean a lot. Then since I reached my 20s, it’s been just general allergy instead of specific foods and very mild and mostly only on my fingers. I still have to treat my skin with hydrocortisone creams fairly regularly when it flares up (only a few times a year instead of daily like when I was under 20), but still daily with emollient cream to keep my skin moisturized.

3. What do you take, if anything, to help?

I don’t need oral supplements for my allergies, luckily. Looking back, as a kid, I could have used something that reduced itching but I was never given anything orally – I don’t if such meds existed then in the 70s/80s? In any case, I’ve never been treated orally for my allergies. Only various creams, and this blue tincture which was used to “paint” the rash bits and which I loved because it eased the itching and made my rash skin feel cool (it always felt hot) 😀

4. Do you seem to be saying, “It’s just allergies” a lot more than usual these days (i.e. because of Covid)?

Nope.

5. What do you hope to get out and do this spring, allergies and pandemic willing?

Not so much “to get out and do something”, but I’d love to not have to wear a mask while grocery shopping/in the library. I hope it’s possible this spring/summer again like last year, and I’m looking forward to it so much! I hate wearing a mask – it fogs up my eye glasses and that messes up my depth vision (a problem going up and down stairs/getting on and out of the bus), makes my face sweat like crazy and my nose run. And if I’m having a bad headache day, it’ll start a migraine attack or makes it worse if I already have one on. So not having to mask up in the spring/summer is one my wish for the near future.

Categories Blog Health Personal

Health Update – Ajovy

Image from Pixabay.

I’ve now been using Ajovy, the new biological migraine prevention injection, for 6 weeks. I’ve given myself two shots (1 shot every 4 weeks). It’s very easy – it’s a injection pen, so just need to press the pen firmly against my belly or thigh. The needle stings a tiny bit going in but I hardly feel it although I’ve seen other users complaining about it? Maybe I just have had worse pains to deal with so that compared to them the pen is nothing. It certainly is like nothing compared to my migraine (or Crohn’s pains when they were worse).

My neurologist uses the following criterion to categorize migraine pain:

Intensity level #1 – Mild pain, you notice it but it doesn’t stop you from doing anything.
Intensity level #2 – Moderate/severe pain, lessens/stops you entirely from doing things (often mandatory things like work are done because you need money to live, but more voluntary things like seeing friends, cooking yourself or vacuuming can go on a break for weeks/months.
Intensity level #3 – Migraine attack. You can’t do anything but be sick from the pain, and have to rest/puke/be in dark etc. until it goes away.

The good news is that in January I only had 3 actual migraine attacks (level 3) 😀 Compared to 8-9 level 3 attacks  a month I had previously, that’s good! Bad news is that it hasn’t improved my daily headache much – I still have a “background” headache every day (levels 1-2), but Ajovy seems to have made it so that the intensity of them varies a lot more now than at least all of 2021. In January, of the non-migraine-attack-days, about half was level 1 and half level 2, while previously the whole of 2021, the background headache was pretty much always at level 2. So now I’m keeping fingers and toes crossed that Ajovy continues to work, and gently wishing that maybe it’ll even keep improving its effects as time goes on. But even if it only stays as-is, it’s still an improvement to what was.

Although I don’t know if it’s enough to be able to work again, I’d have to go into rehabilitation again to see how outside home, full-day commitment even one day a week and the stress of being around noise and other people affect the migraine in this new situation. The last time I tried, even one day a week, I ended up with migraine attacks on 2-3 times a week and on sick leave for a year because migraine got so bad again but then I had no Ajovy which may or may not make a difference. So I’m living exciting times for the next several months and have a little bit of hope again  😀 

Also, I just counted today, that the longest time I went, since starting Ajovy, without a migraine attack was 18 days!! I haven’t had that long an interval since the migraine became chronic in 2008!! I had a couple of really bad level 2 days in there, but no attack so it counts!

The neurologist will call me on the 21st of March, and that’s when we’ll see if Ajovy has been effective enough to apply for continuation from KELA. Fingers crossed!

Categories Blog Health Personal

New Migraine Medication

Last week KELA approved me for Ajovy, a biological migraine prevention medication 😀 On Monday my pharmacy ordered it for me, I got it today, and about 45 minutes ago I gave myself the first injection! Here’s hoping it’ll be a lot of help! A biological med is my last, best hope as far as migraine goes! Ajovy is injected once a month, and my neurologist says that within three months we need to see my migraine attacks reduced by half in order for KELA to approve continuation. So fingers and toes crossed!