I had my visit with the Hematologist today to get my 4wk test results after my iron infusion. I haven’t felt a HUGE difference to date from the iron infusion. I do feel a little stronger than I did prior to the infusion and I think my endurance has improved by a small amount. I am bouncing back slightly easier after exertion than I was before. I still however feel constantly tired. I am not sure if that is going to improve or not, but I did read somewhere that the improvement can take up to 8wks to reach full impact. I hope that is true because while I wasn’t expecting miracles, I was hoping for a little more improvement than I have gotten so far. I am still hoping for a little more energy, fingers crossed that is still coming!

Anyway, my ferritin was 14 before my iron infusion which is less than normal. Normal ranges are between 40 and 150. By blood work it appears that I am only mildly anemic but the hematologist says that my inflammation levels would be masking the true level of anemia because inflammation normally causes your ferritin to be high. Which means I was more than likely quite severely anemic.

My post infusion blood test had my ferritin level at well over 1500! Which is way high! So I guess that is my inflammation is now showing it’s true colours!

My platelets have improved somewhat, they are usually over 500 but are nearly in the normal range at 405. Normal is 150-400. My hemoglobin has also increased/improved but I didn’t get the number. I must ask my gp for the exact number next time I see her.

The inflammation markers ESR and CRP are pretty similar to my usual high levels and haven’t changed at all by the iron infusion. The hematologist said this leads him to believe the inflammation is related to my Connective Tissue Disease which we already knew.

The hematologist wants me to get a blood test in 4mths to check on my blood levels to make sure they aren’t dropping. He said again I may need more infusions in future. So I will see him again in 4mths. It will be interesting to see what my blood does over that time!

I am so hoping my energy levels are still going to improve, I guess time will tell!

I have come to know some signs that I am going to flare. I will often get all over itching the evening before I start flaring. It will have me itching all over for a few hours. I have noticed my mood also drops a day or so before a flare and I will also often start feeling anxious about things that I can normally put aside and not stress about such as money issues.

I had both of those things last night and lo and behold I woke up this morning in lots of all over pain and stiffness, well more than usual! All my skin feels hypersensitive this morning and as I sit on the couch, the areas on my back in contact with a cushion hurt. With the weather cooling I have been having increased pain anyway, cooler air makes my arms and legs ache. I will be hot everywhere else but my arms and legs will be cold and sore.

I haven’t noticed too much improvement yet from the iron infusion, but it has only been a week. I do feel as if my muscles are ever so slightly stronger and I have slightly more endurance, but it is hard to say for sure. My sleep also feels SLIGHTLY more refreshing. I certainly don’t feel constantly sleepy like I did in the week or so preceding the iron infusion. Having said that, I got up late this morning at 10am and it is now lunchtime and I am starting to feel sleepy again, but I suspect that is more related to today’s flare.

I had my Iron Infusion two days ago and it went really well. I didn’t have any reaction to the iron and it all went very smoothly. It was a long day and a bit boring sitting there for 6hrs but it will be well worth it if it works as well as the Hematologist says it will!

It was very sobering being where they give it to you as it is also where they give blood transfusions and do chemo treatments.

I was at the end of a really long room so you could see all the iv’s hung up along the whole room. I feel very grateful that I was just there for the iron and not chemo or anything more serious.

Not the best photos, but you get the idea. I was just using hipstamatic on my phone. The iron looks rather yucky in the bag. They gave me Phenergan to start with and IV steroids and then after that they started the iron drip together with saline.

The phenergan didn’t make me sleepy at all but I did have facial swelling yesterday and today which I often get when reducing my steroid dose. I spent most of the day reading on my phone and when it’s battery run out on my husbands Samsung Tablet.

They fed me morning tea and lunch and afternoon tea. Lunch was really yummy. They put on a good meal there! The saline had me going to the toilet a lot so I had to drag the drip along with me every time.

So far I don’t feel any different but it is supposed to take a few weeks to work. I have been pretty tired since and am not sure if it is related to the iron or if it is just usual me not feeling great. I spoke to the specialist before I left and he tells me I will feel like a new woman and will feel better than I have in years. I hope so!

It will be interesting to see what kind of improvement I do get and how that will effect my other symptoms. I will be sure to keep you posted!

Right now I am off to have a nap because I can barely keep my eyes open!

Kyan’s birthday was last Saturday and it was a big day for me. As expected by night time I was in a lot of pain and the next day as well. Now ever since then I am felt really tired from the minute I get up in the morning. Once I de-stiffen in the mornings I usually feel a little better during the day but the past week I have just been wanting to go back to bed. I have been not just tired, but really sleepy, and have been struggling to stay awake most days.

Usually after a big day I will flare for a couple of days afterwards and then get a bit better, but while the pain has improved I am still super tired. Usually a nap will give me a little more energy in the evening, but I am waking up after a nap just as tired and have been wanting to go to bed right after the kids do. Blech.

We are going to the coast next weekend for a long weekend because Jasmine and Dean are doing a triathlon at Mooloolaba, but I am really not looking forward to it because the humidity alone wipes me out but going to see Jasmine race is going to wipe me out as well. Plus Dean is wanting to go shopping and go to the beach with the kids. I just hope my energy improves a little between now and then or I will be staying at Mum’s and Dad’s.

Bring on that Iron Infusion, I so hope it works! Pity it wasn’t before Mooloolaba rather than after!

I went to see the Hematologist today to see about any possible blood diseases and about getting an iron infusion. He didn’t even mention the blood diseases I think because I have had the anemia for so long. He did say that I should definitely have an iron infusion as I am probably a lot more anemic than my blood work indicates because the inflammation will mask some of it. So that has left me feeling really hopeful that I might get a bit more energy back. That would be so awesome!

So I am booked in for two weeks time for the inpatient iron infusion. He did say I will probably be anemic for as long as I have periods. Oh joy! He said that knowing I skip the sugar pills with the pill so it must still effect it. It has me wondering whether I shouldn’t have a hysterectomy. Not that I particularly want one, but it would be a lot cheaper than paying for the pill!

He said if it works to make me feel better, I just need to ring when I start feeling worse again for another infusion but it should last for around 12mths.

So while it is going to be a boring 6hrs I am really looking forward to having it done and I will make sure my phone is stocked with plenty of books. Mind you the nurse said they sedate you so I may be snoring instead!

Oh yeah, and I was in and out within 5mins for the initial $365 consultation. Wow!

I felt not to bad yesterday and maybe I overdid it, I don’t know. I had to treat Jasmine AGAIN last night for head lice. I am so over that, but with the stool she normally sits on broken I had to put her on a taller stool which was too high. I had to put two cushions under me on the couch and that required balance. I don’t know if that is the cause but my back muscles are screaming today. My hands are also really sore and throbbing and both face and hands are swelling.

With all the rain we have been having I took advantage of the spa last night which had me feeling quite relaxed. I so hope it wasn’t the spa that did it. I made sure the jets massaged every part of me, so I am really hoping that is not the cause of my feeling so bad today. Mind you I took my blood pressure yesterday and it was a scary, 170/144. If my blood pressure doesn’t settle down in the next week I will go see my gp again. It isn’t normally that high but I can’t think of any reason why it should be so high, I wasn’t stressed or anything, so who knows.

I am really puzzled over the facial swelling, it is something that has settled down a lot over the last few months (has been so nice to see my normal face shape again!), when previously I was having it daily…so why am I getting it again today? Maybe the humidity, maybe overdoing it, who knows. It was REALLY humid yesterday and I think it is going to be bad again today, so I am really hoping for some rain to settle it down.

I took some panedine today which I normally avoid because I take mersyndol so often at night time. Hopefully that will help with the pain levels!

I am feeling so frustrated over the lack of diagnosis thing. I am grateful I am being treated regardless, but not having a diagnosis means I can’t join any particular support group because I don’t really know for sure what I have. I would love to join a local support group just to share stories and hear other peoples experiences, but I feel like I can’t because I don’t know for sure yet what I have. Even the fibromyalgia, while my Rheumy has mentioned it multiple times on letters to my gp, he hasn’t outright said I have it so while it seems likely I don’t know for sure. If I do have fibromyalgia there is still something else going on because fibro doesn’t cause inflammation and I have plenty of inflammation markers in my blood work.

So Far! Well I skipped my BP meds this morning so I can take it tonight and take them at night from now on. So far no tachycardia. YAY! My resting heart rate was a normal 77.  Just goes to show it is related to the BP meds. I wish gp’s would listen to their patients more! I guess I will see how it goes tomorrow after taking at night, but surely it can’t be good to be taking them if my heart is reacting that way. Especially since it is enough to affect me physically by making me light headed and weak and heavy and dizzy.

My blood pressure of course was sky high!

Will be interesting to see how it goes tomorrow I guess I just have to wait and see. If the timing is the same I will get the tachycardia as I am sleeping or just before since I read in bed for a while.

I will give it a week and if I am still getting it I will go back to the doctor. Maybe she will take me more seriously this time! Might take the BP machine with me to bed so I can take my blood pressure if it starts happening. (yeah I am not good at counting my pulse! LOL)