Oops, only half the dose!

I have been taking only half the dose of Feriprox from day one till now accidentally, however this seems to have worked out well as there would of been a period of time without any of the drug. The positives so far are;

Less shakes
Less bouncing in vision
Very few smooth muscle spasms

The negatives

Stiff joints
Tiredness

This shows that with only half the dose I am making massive improvements. I will now take Feriprox  two times a day with two tablets. I am confident that the results will be excellent in very little time. Today even the headache was minimal and not localised like last time.

I need to ask for something for my stiff joints.

Regular headache location

A regular pain behind the lower Occipital bone has been occurring throughout the day and as I recall has occurred on other days. The pain sets off as sharp and then almost immediately turns cloudy and heavy. Today I was up and about quite a bit and was not under any major amount of stress. My shakes have been 2/5 however my coordination has been very bad. 

Faster reflexes

Today has been a big development in the taking Feriprox (5 weeks so far). For the first time in 33 years (I had a brain hemorrhage in "82), my arm and hand on my right side caught a bottle as it fell off the tabletop.

I'm well chuffed. My shakes have got less and I am more coordinated. I am very optimistic with the future.

Faster reflexes

Three days ago there was a big development in the taking Feriprox (5 weeks so far). For the first time in 33 years (I had a brain hemorrhage in "82), my arm and hand on my right side caught a bottle as it fell off the tabletop.

I'm well chuffed. My shakes have got less and I am more coordinated. I am very optimistic with the future.

Aching joints

At first I put it down to exercise as in being out and busy however recently I have felt it in my hands and neck. Should I take some medication of the counter shelf  to help with aching joints?

When I stopped weight training (which was about the time of my first hernia operation), I had a bad shoulder. The shoulder pain seemed to be a minor deltoid tear however, I believe I believe I could have a nerve trapped upon rotation of the shoulder. I have arranged a scan with my doctor and am taking 1600 ml of ibuprofens per day to reduce the swelling, hopefully this will also help out with calming on my nerves.

Headaches

They seem to be everyday to some degree however today seams to be the worst to date. It appears that The worse my headache, the worse my coordination is as well as shakes. The headaches seem to be different, today's started as an all over dull cloud, then dull behind the eyes and in the temples then forehead and behind the eyes all still heavy and cloudy. Other days have included brief sharp pains. A contributing factor to this, seems to be tiredness.

The Facebook page superficial Siderosis has many comments with regards to tiredness and headaches for those with SS so this would seem to be expected. The problem with sleeping during the day is in the evening when is trying to sleep I do not   wish to  therefore I wake up late and tired so I intend to try to stay awake as much in the day though this will make me more tired during the day. I have antidepressant pills however I feel a pill to relax to relax me more would use  less energy making me less tired. Could this work?

Reflexes and coordination

Thursday there was a big development in the taking Feriprox (5 weeks so far). For the first time in 33 years (I had a brain hemorrhage in "82), my arm and hand on my right side caught a bottle as it fell off the tabletop.

I'm well chuffed. My shakes have got less and I am more coordinated. I am very optimistic with the future.

Limited treatment

Recently I was informed by the NHS that the drug Ferriprox and its treatment are to be limited to 90 days, thereafter they will no longer supply either. Their reasons were that the application had no weight to it though we are also informed that people in other areas are getting this funding. I am getting together a letter to our local MP to see what he thinks as well as to ask whether my medical status is because of a postcode lottery.

Health wise, I am finding I have the shakes more with my entire body and I am much more tired. My second (and last) hernia opperation is set for the 20/2 as long as my blood count is ok.


Late February I was granted a years supply of Feriprox and care.