Month: October 2014

Generic v Brand name medications

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

***Warning graphic info regarding  my menstrual cycle***

Here in the UK we are very used to being prescribed generic rather than brand name medications. It is an easy way for the NHS to save money and I am all for that. I always felt somewhat bemused when I saw on forums people posting their complaints (normally in the USA) about their insurance companies only paying for generic medications after they had been on the brand name drugs. I was always under the impression that the generic versions of the brand name drugs were identical. Oh how very wrong I was.

A few months ago the contraceptive pill that I have been taking since around 2009 was suddenly changed to a generic version. I had been aware that the changeover was likely to happen as it had been mentioned on various UK forums that women had their prescriptions filled with this new contraceptive pill. When they had enquired with their doctors they had been told that C (how I will refer to the pill) was no longer in production and the new drug D was now being issued in its place. Apprised of the situation when my repeat prescription was filled with D, I made no enquiries myself figuring that I would be told the same as everyone else. If I was being given D instead of C I assumed it was the same thing just a different brand.

Initially there were no issues with the new contraceptive pill however after two months problems began to arise. After three months the side effects of the new contraceptive pill were unbearable. As I am too sick to visit the doctors at the moment (with visiting the physio as well I am exhausted also) and I felt it wasteful to request a home visit which I couldn’t guarantee would be with my own doctor, I decided to write a letter. I find phone calls with my GP can be rushed purely down to my doctors workload. With a letter I could inform my doctor of all the problems I have been having so that he would be in a better position to help me. I have copied and pasted the letter below however some details have been edited to spare your blushes.

 

Dear Dr,

 

I am sorry to have to contact you via letter but it is probably better for me to give you more detail than can be given in a phone call, when I know that you are under enormous time constraints. I will give you fair warning that this is about my menstrual cycle, so if you are eating you may wish to finish before continuing!

Recently you changed my contraceptive pill from C to D . Unfortunately D has been an absolute nightmare. I am now having periods, which I haven’t had since being on C. These periods are without giving you too much gory detail extremely painful. I am bleeding for around 10-12 days. When I have had periods in the past the longest I bled for was 5-7 days.

I am also noticing that I am having increased joint pain around the time of my period which would be down to the change in hormones, it is causing my tendons, ligaments etc to become more lax. The surge in hormones is also increasing my Dysautonomia symptoms and I am fainting and having more pre syncopal episodes now that the pill has been changed.

I have looked online and have seen no reports as to why my contraceptive pill has been changed from C which has worked effectively for me for many years. Please can you change me back to C? If this is not possible then I think I will need to see gynecologist. I do not want to have the contraceptive implant due to my poor healing and scarring (due to Ehlers Danlos Syndrome) and I also do not want to have the M Coil fitted as I find smear tests painful enough, without the added fun of trying to get a coil inserted.

My periods have been painful from the age of 11, they are not only painful but they cause me to vomit and have diarrhoea. As a child I was told that the pain would go away when I had a baby. Not very helpful when like me you have zero maternal instinct and sex is illegal at age 11. I have lost  days every month  from school, then university and then my workplace due to the agonising pain from my periods. It is embarrassing having to say to people they can’t pop by and see you because you are stuck in bed with horrific period pains. It sounds like something from the dark ages.

I have tried lots of prescription painkillers over the years nothing worked, even on morphine my periods are still painful. The  pain goes through my buttocks, down  the backs of my legs and there is pain throughout my abdomen (basically belly button down). This pain happens all day and all night until the bleeding stops and can begin as many as three days before my period starts. Sometimes the pain is so intense it is contraction like and I can time them as come and go – usually 3 minutes apart. I have experienced a lot of pain in my life and period pain is the worst pain I have experienced by far. Purely because of its duration and the fact it is unrelenting.

This new pill is making my moods swing, I am tearful one minute and angry the next. Its like I have PMT all day everyday. I feel like I am having a bout of the blues, it’s not depression but I feel like I can’t be bothered with anything and feel great sadness. I worry that continuing with this pill will lead me into a depressive episode which I really don’t want.

I have sore breasts for two weeks out of the month. They are so sore I can’t even stand someone brushing up against me by accident or wear a bra. To be blunt this new pill is making my life a misery.

If I can’t have C on prescription then something has to be done about my periods. I know painful periods are part of Ehlers Danlos Syndrome but I am not prepared to put up with the pain when it is not medically necessary. As I have said to you before I will jump for joy the minute any doctor tells me I can have a hysterectomy as I am sick to the back teeth of my uterus. This probably seems melodramatic but I assure you I am not kidding. I really can’t stand this.

I had to write to you rather than book an appointment as it would take at least 20 minutes for me to stop crying when I started talking to you. This new pill has me on the verge of depression. I am starting to question whether it is the pill or if I have started the menopause? I know my days of being on the contraceptive pill are numbered due to my age. So something will have to be done now or in a few years regardless. Sorry to have rambled on but I wanted to put you in the picture of why I want / need  to be put back on C.

 

My doctor rang me the day he received my letter, I wasn’t expecting such a prompt response. He told me was very sorry that I had been having such a torrid time of it since being placed on D. He informed me that D was the generic version of C and theoretically shouldn’t make such a difference but he was well aware that some people do find generic versions of brand name medications produced side effects that were not present when using the brand name. C’s production had not been stopped but doctors are advised to issue the generic medication wherever possible, a prescription for C would be at the pharmacy the next day for me and my notes would be amended to show that I must be prescribed C not D in future. He told me that he would probably get into some trouble for prescribing C instead of the generic version however he had two pages of reasons why I couldn’t be prescribed the generic version thanks to my letter.

I was so happy I could have cried when he told me that C was still in production and that I could have it. I had been an absolute mess on the generic version. I have been back on C for just under two weeks and the difference is amazing. I feel like me again, the sadness has gone, my joint pain is back to its normal level. I just feel more human again and hubby is no longer getting his head bitten off at every available opportunity. Having just chatted to him about my blog post he told me he can’t believe the difference in me already.

Before I experienced the issue with having a generic medication instead of the brand name I never gave the complaints on forums much credence. I like many other people assumed that generic meant the same. I know now that it was a huge mistake I am just really pleased that my own doctor appreciates that some people need the brand name medication. I was lucky but what about those patients who aren’t?

I didn’t get my request for a hysterectomy, I will keep trying for that one. I even offered to donate my uterus for transplant to someone who wants a child – like the stories that have been on the news recently. My doctor told me that our part of the country isn’t set up for that yet. I will be at the front of the donations list when it is. As I stated in my letter I really am sick to the back teeth of my uterus and all the problems it has caused me for the last 30 years.

I do get angry when menstrual problems aren’t taken seriously. I really do believe that if men had periods the situation would be oh so different. Even women doctors can be dismissive of the issue if they have never experienced the discomfort of bad menstrual cramps. It is a serious issue for many women and I sincerely hope any young girls who are having issues aren’t given the advice that I was 30 years ago that having a baby will solve the problem. Given my family history, I can tell you that even after the women in my family have given birth they still have horrific period pains.

I know given my status as a barren old maid well not quite, it’s actually mine and hubby’s choice not to procreate, the menopause fairy should be visiting me early. It is something that fills me with dread because again female family history is not on my side with that one either.

Oh the joys of being a woman!

 

Unsolicited Medical Advice

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

  ***Sarcasm alert***

Nothing is guaranteed to get me raging more than unsolicited medical advice. I can be calm and happy one moment yet once I am on the receiving end of someones latest theory on what will get me well, I can be incandescent with rage in around 60 seconds. It’s not the sentiment of the bearer that I question, it’s the very little knowledge of my condition that they possess that irritates me.

Unsolicited medical advice is just that unsolicited. Unless I have asked a direct question regarding your opinion on or suggestions on what would make me feel better or would cure my condition then just don’t. I know myself in the past I have offered up to others what I have considered to be pearls of wisdom without them asking for it. However now having had some time being on the receiving end of countless suggestions all of which were unsolicited I can tell you it’s infuriating. Now I refrain from doing it because I know that it is not at all helpful. Sending me links to new medical papers on research into my condition is not the same as unsolicited medical advice. That is very helpful and greatly appreciated.

Over the last 7 1/2 years I have all sorts of helpful suggestions, from being told that I was being punished for a sin in my past life and needed to pray harder to gain recovery or to being told to eliminate stress from my life. Eliminating stress from any ones life is good thing however it’s not really been shown to be a cure for any illness that I am aware of. I have been informed that removing the artificial sweetener aspartame from my diet would be the magic bullet, I had several emails about that one when it was doing the rounds. I have been told that I just needed to get outside and exercise. That one hurt me quite considerably as out of all the things I can no longer do walking my dogs is the one I miss most. Anyone who suggested that one clearly doesn’t understand my illness or the sense of loss I feel about being no longer able to do so many things.

We all in our lives have provided unsolicited medical advice to someone be it a partner, a family member or a friend and when we have given them this advice we have done it from a place of love. We give them this advice because we truly want to help them feel better and get rid of whatever illness is ailing them. It is not done to hurt them or to make them feel bad about themselves. I try to remember the sentiment behind the persons advice when it is issued. Sometimes it is really hard though because issuing advice for a cold is a world away from issuing advice about a long-term medical condition. 

People with long-term medical conditions usually have more knowledge about their conditions than a lot of the medical personnel that they will come into contact with. Those with long-term medical conditions know how to manage their condition what medications work and what doesn’t. So what irks me is when someone who has zero knowledge of your medical condition decides that because they have read, seen or heard  a nugget of information that they are able to tell you what to do to get better. A situation that has long eluded the medical profession.

A piece of advice that tipped me over the edge recently was received from someone who should have known better. A few weeks ago my phone beeped to let me know I was in receipt of a text message. I had a look at the message and just growled. It was from a friend who works within the medical profession who had sent me a link to a page on BBC News website. Without even checking the link I text back “Please tell me this isn’t about the girl who went Vegan and magically cured her PoTS?” I knew it was without even looking, as this “story” had been doing the rounds on various forums, where there were several Vegans and no, they hadn’t been cured despite their dietary choices. What we had learnt on the forums was that said person who cured her medical condition, fell into the age group where you can grow out of PoTS and she also had a cookbook being published so hence the flurry of unhelpful newspaper articles about turning Vegan as the cure for PoTS. My text message received a rather sniffy response, the tone of which made me feel like because I hadn’t decided to become a Vegan immediately then I really must not want to get well.

There were a lot of things about this text conversation that annoyed me. Some weeks previously I had informed this person I had been diagnosed with spinal arthritis and received no response. As this person was now moving into the outer orbit of our both mine and hubby lives I didn’t take offence. Sometimes friendships change and that’s the way of life. Secondly this person works within the medical profession in a highly paid and highly responsible job. Thirdly this person has known me for nearly 20 years and in all that time I have been vegetarian, they know this. I know vegetarian is not vegan – I have been vegan in the past for about 6-10 months. Finally, this person is supposed to be a person of science, as good as a balanced vegan diet is for you where is the medical evidence to back this woman’s claims up? I didn’t argue I just ended the conversation pointing out that I didn’t just have PoTS anymore that I had in fact been diagnosed with severe autonomic nervous system dysfunction and did they have any dietary suggestions for that one? Funnily enough I haven’t heard from them since.

I don’t know what made me angrier the suggestion that becoming a vegan would cure me or that when I rejected the advice I was made to feel like I wasn’t doing everything in my power to get well. It’s not the first time that I have been “accused” of not wanting to get better, when I have rejected someones advice. That’s why when I receive messages / emails or have conversations with people when they offer advice I try to smile and say thank you rather than get angry about it. However due to this person’s medical background I felt extraordinarily let down by the fact they had even sent me the link without first checking out its scientific validity.

Again I don’t doubt this persons sentiment was anything other than provide me with some advice that he or she felt would help set me on the road to recovery. It is just  on that Sunday morning I wasn’t able to see that and responded as I would have done 7 1/2 years ago. I learnt through trial and error when people were offering me advice it was better to smile and nod rather than to dismiss their advice out of hand as hard as that maybe. 

So having sometime this week to think about all the unsolicited medical advice I have received over the years I thought I would share some with you;

1. Pray harder / more / start  praying – this one is always a little difficult for me as I hold no religious beliefs. It is also quite insulting when you think about children who have life limiting illnesses would you honestly impart this advice to the parents or imply that their lack of praying is the reason why their child is sick? It just seems a little insensitive and a person’s religious beliefs are private between them and their God.

2. Eliminate stress / take up meditation – Everyone wishes that they could eliminate stress from their lives, no one has ever said “please give me more stress”. So when this little pearl of wisdom is thrown my way I do have a little chuckle to myself. Stress is all around us its part of the modern condition. There are things that you can do to reduce your stress. I like my morning Pilate’s session that is done in complete silence as I can not think about anything but the exercises I am performing. It does quieten down my mind I can’t argue with that however it is yet to cure my medical conditions.

3. You need to get out more – I can’t argue getting out of the house lifts my spirits and makes me feel part of the human race. However getting out of the house will also land me in bed for several days just due to the over stimulation of my senses and the physical energy required to keep myself propped up in my wheelchair. When I can, I take a short drive with my husband for a change of scenery and some fresh air whilst he walks the dogs. What people don’t realise is to achieve those 30 minutes out of the house I have to rest all afternoon. I wonder what illness getting out more is known to cure?

4. Get some exercise, you feel ill because you’ve let yourself get so deconditioned – ha ha ha ha ha! OK I will admit taking up Pilate’s has helped me loads in the last 6 weeks. However the type of exercise that the people who suggest this to me mean is going out for a brisk walk along the seafront etc they do not mean lying on the floor for 20 minutes performing Pilate’s.

5. If you lost weight you would feel better about yourself – I have no argument with this one. Being a healthy BMI is better for you ( and yes I am fully aware of the arguments surrounding the fact that the BMI measurement needs updating as it’s not completely accurate), its kinder to your joints and if you are overweight losing weight can make you feel fab. However when it is said to someone who has gained weight as a side effect of medication that they can’t stop taking it’s not at all helpful. I wonder if you had a friend who was overweight but healthy you would have the cojones to suggest that? Feeling better about myself suggests that the person believes that my condition is psychological and not physiological which is not the case.

6. Change your diet eat Paleo, Fodmap, vegan, gluten free, raw food, clean food etc etc etc – I can’t argue with the fact that many people with EDS and PoTS have had great results in reducing their gastrointestinal symptoms when they have changed their diet. People with autoimmune diseases such as Myasthenia Gravis are encouraged to go gluten-free to help manage their condition. Diet does play a much bigger role in the body than current medical thinking appreciates. I believe as long as you are eating a balanced diet as free from convenience foods as you can you are doing a great job. I have tried going gluten-free it made absolutely no difference. As I can’t digest raw vegetables or fruit with horrific stomach pain I will not be trying the raw food diet again. I have been thinking about going vegan for a while now for ethical reasons not health reasons but I am currently too sick to do anything about it. I do say do whatever you can manage diet wise but do not become a diet zealot / bore! However don’t suggest things to me that I have already tried!

7. You need to adopt a more positive mental attitude – My only answer to that one begins with F and ends with F. Moving on!

8. You need to take up a hobby –  Oh OK so because you don’t understand the world of blogging you are automatically assuming that it’s not worthwhile? See above for remainder of response.

9.Have you tried X,Y,Z herbal supplement – I am not against herbal medicine that has a proven track record (or large amounts of anecdotal evidence ) such as evening primrose oil for PMS or Black Cohosh for the menopause. I use peppermint tea whenever my stomach is playing up (pain or wind) as I know it works for me and many people on the forums I am part of use liquorice to boost their blood pressure. What I am referring too are the people who know zero about your condition but insist that a friend of a friends uncles, aunties , sister cured themselves of a, b, c, by taking this supplement. Why they think you have the same as their friend of a friends uncles, aunties sister is beyond me as if you ask them to name your own medical condition they wouldn’t have a clue. 

10. You are paying for the sins of a past life and need to be forgiven – I saved this one until last as it is a personal favourite of mine. If indeed I am paying for the sins of a past life what am I supposed to do about it? It also brings the question to mind what makes the bearer of this news so special that they aren’t being punished? I could go into a whole anti religious rant but I am respectful of other people’s beliefs I just wish they could be respectful of mine.

I have probably had quite a few more than I can currently remember that they are the ones that stick in my mind. I am sure over the years to come I shall be in receipt of many more!