So what comes next in the adventurous Journey of UCTD?

In the last blog I told you all about the vitamin D deficiency which many people have now a days but it also seems to go hand in hand with UCTD.

The first medication to be prescribed is non-steroidal ant inflammatory drug, ibuprofen being first in line to be tired. When I did not get pain relief from this, I was put on Hydrocodone. It was already established from past experience that I was unable to take Voltarol without having immediate and violent gastrointestinal reaction. I had been given Hydrocodone in the past for an episode of sever lower back pain and had tolerated it well. This time, however, within half an hour I was severely dizzy with diarrhoea and vomiting.

Based on this allergic reaction I was left with the option of ibuprofen or nothing for pain relief as well as reducing inflammation. While I was to take 800mg thrice in the day, I found that there was considerable breakthrough pain before the next dose was due. So, I started having 400 mg every 4 hours and that gave a more even pain relief. The pain levels on a scale of 1 – 10 always hovered around 6 at the lowest despite the high dosage. The other thing that comes along with high doses of ibuprofen is its annoying side effects. This list is as long as your arm but the ones that are most common are the gastrointestinal issues. They are:

·        abdominal pain

·        acid or sour stomach

·        excess air or gas in stomach or intestines, belching, passing gas

·        bloating and full feeling

·        diarrhoea

·        difficulty having a bowel movement (stool)

·        heartburn, indigestion

·        nausea and vomiting

·        weight gain.

It can also lead to ulceration in the stomach if antacids are not taken alongside.  Initially, I was given ranitidine which is a histamine-2 blocker and works by reducing the amount of acid your stomach produces. Ranitidine also treats gastro -oesophageal reflux disease (GERD) and other conditions in which acid backs up from the stomach into the oesophagus, causing heartburn. I was actually experiencing a lot of heartburn and acidity. For a few weeks 1 tablet twice a day was effective for me but since I was having the maximum dose of ibuprofen possible,  800mg three times a day, it soon did not provide adequate cover. 

So the next visit to the rheumatologist the ranitidine was off the list and omeprazole was added on. This is a proton pump inhibitor and also used to decrease the amount of acid production in the stomach. It is not to be used for immediate relief from heartburn. This is to be taken once a day. This was a much better option and for the first couple of months I had this daily but after that it was to be taken as needed. Once I stopped taking ibuprofen regularly I also take omeprazole once in a while when I can feel the rise of acidity and heart burn on the way, after all I take plenty of drugs that impacts on the stomach. It was amusing to note that side effect of omeprazole can be muscle and bone pain! Also it does tend to make one constipated so have the laxatives handy.

A not so common side effect but one I am afraid I have propensity towards is tinnitus. I developed tinnitus as a young adult and after extensive investigations it was decided not to have any physical cause. I learnt all the ways of controlling it and masking the sounds. With such high doses of ibuprofen, tinnitus came back with a vengeance. The noise can get from a soft buzzing to actually screaming levels and this can have a serious impact on the rest, relaxation and sleep. It affects my left ear more than the right and the noise level can be considerably diminished / obliterated (depending on the original intensity) if I turn my head to the left. It is a hard position to maintain. I have to consciously deep breath and relax while I keep my head turned to left to bring the tinnitus under control. This had to be done several times in the day and sometimes the noise actually woke me from my sleep.

I went back again to using all the masking techniques – letting shower water drum on my head, listening to music with headphones, relaxation. In fact I was tempted to dig out the masking aid that I had somewhere. However I did know that the aid was set to mask the original lower levels of noises and so would not be very effective.  The problem diminished once I managed to reduce the ibuprofen intake. Now I still have occasional tinnitus, which also occurs when I have needed to take ibuprofen. There is nothing more that can be done but to tolerate it.

When pain levels were considerable it also hinders sleep which then becomes a vicious cycle of lack of sleep – increased pain – lack of sleep. For this I was given some amitriptyline which acts as a muscle relaxant, mild mood enhancer and sleeping aide. While I did not want to get dependent on sleeping pills I could see the need for breaking the lack of sleep / pain cycle. It does feel like a drugged sleep and hard to shake off the hangover feeling but the sleep helped considerably more than expected. Since then I have a supply of it and use it when pain levels get high and impact on my sleep. I just have it for 3 – 4 days maximum. I have not needed it in the last couple of years as my symptoms are better controlled.

However, I do have a cycle where I have a few days of insomnia and manage maximum 6 hours of sleep. This peaks when I feel utterly exhausted and unable to function. Then it swings around and I just sleep up to 10 hours a day. I think the worst sleepy time I had was about 16 hours in the day. Now that I know there is a pattern it does not worry me. I go with the flow rather than force my body to do something it does not want to and get stressed, as this only makes the matters worse.

I shall the saga of ibuprofen impact here and continue in the next blog with development of anaemia and new symptom of difficulty in swallowing.

I need Vitamin D in this Journey of UCTD

I left my journey of UCTD the last time at the point asserting myself with my doctors and getting some examinations going. I must say at this point I was very much of the mind that this is going to be some form of autoimmune thing since I have become increasingly allergic to so many things over the years.

I am very careful with getting my repeat prescriptions well ahead of empty pill pots situation. In UK one has to put in the request at the doctors’ surgery and collect the prescription the next day. Now I was with a surgery in the next city (I used to live there and did not move to local doctors as I liked the ones I had there) I waited for my husband to have a day off and went over to hand in the request. I could only get there next evening to pick up the prescription and I was told it did not get done and my doctor was not around to fill it up. I would have to see a doctor if I wanted to get my Ibuprofen. After some arguing I managed to get in to see the locum doctor as she would not just fill in a repeat without seeing me first.

Now this turned out to be actually for the good as after going through the medical history she asked if I had got my Vitamin D levels checked. Apparently this was a hotly discussed topic at the latest medical conference (2007) she had attended. She also identified that some of the symptoms were a part of vitamin D deficiency. So I came away with a prescription as well as a lab form for Vitamin D testing. When I next visited the rheumatologist (yet another team member) I was told that I had got very little Vitamin D in my body. He suggested that my GP should organise my Vitamin D injections. When I spoke to my GP they said no it should be the rheumatologist’s responsibility.

Well after the arguments going back and forth I got a prescription from my rheumatologist and walked or should I say hobbled, to the hospital pharmacy to get it. Now I always tell the pharmacist that I am allergic to soy so that they can check the medication being given to me. I got the medicine and went home to have the new pill. After a little while, I was reading the drug information leaflet and find that OH DEAR! There is soy in the tablet. (Apparently most Vitamin D has got a soy base) I at once had my antihistamine just in case, as with feeling ill anyway there was no way of saying if I was reacting or not. I did cause a real flutter in the hospital when I rang and complained. I was asked to return the next day as they would organise a new prescription for me.

I was also recommended injections to boost the levels faster but unfortunately there was a delay to obtaining it from the manufacturers. Meanwhile the dose given was minute – 0.25 mg to be raised over a month to 1mg. I find this very contradictory as on one hand they were talking about giving me 300,000 units per injection but orally they did not want to give me appropriate dosage. Around this time I found that having a GP in another city was not particularly helpful as I was finding it difficult to get myself to the surgery. I moved to the local one and spent a long time with the first GP I saw and explained the situation as it was. I also gave him articles about Vitamin D deficiency so that he could increase my prescription to 1 mg a day. I am not sure what he thought of me but seemed to smile and nod his head in understanding and I expected to have the medication upped with the doctor to have read up on my issues. Ah well we live and learn as I think within 5 minutes of my leaving I had also left his mind.

So the next visit I got the next GP in line and this guy was actually interested in me and my problems. He carried out a full physical examination. He checked my blood results, made notes and generally made me feel as if my care was important to him.  Around that time the pharmacist informed me that the injections were now available and so made arrangements with the GP nurse to get three injections over a period of 3 months. I do not know what I was hoping for but it actually made little difference to my symptoms at the time. I think because the level was so low and even after the injections it barely came up half way to the lower limit. I continued oral Vitamin D 800 IU and calcium and blood tests showed a slow creep upwards. It was actually when I came to Australia and the rheumatologist here said that is not enough and set me on 2000 IU a day that the blood levels came up to just over the lower limit. I am sure that contributed to the eventually stability of my health and I continue to have it every day.

And this is just the beginning of the Journey into UCTD

I had meant to write about the next stage of my Journey through UCTD jungle the very next day. This is the month of Lupus awareness and since I have some symptoms of Lupus I decided to get most of the journey so far, down in the blog. But one thing I have learnt, in the last 7 years, is that planning, while a good idea can be futile when some symptom decides to make a break for it from the tight leash of drugs. That’s exactly what happened the next morning. One of the wild card that gets played by UCTD is fatigue. It comes out of the blue and hits you like a truck train. I, very happily, bounced out of the bed with a fair idea that being the day for Methotrexate I was bound to be tired later in the day. However, I was not prepared for that massive diffusion of energy that occurred. I sat down with a cup of tea and literally felt the energy drain out like air from a tyre.

Now that put paid to any plans of writing, exercising, housework and cooking that I had for the next 2 days. Third day, I managed to do grocery shopping and cooking dinner. Today, I finally feel up to thinking, which I know you will agree is important to writing. I left the journey in mylast blog at taking anti-inflammatory drugs both none steroidal and a short burst of steroids (courtesy of my GP). I realised that by now I had visited the rheumatologist 3 times and all I got was a glance in my direction, a quick question as to how I was doing and a repeat prescription of more ibuprofen.

I realised that this was not at all what I expected from a specialist. I felt that I had been so focused on the severe pain in bones, muscles and joints that I could not actually think and effectively communicate my problems and needs during my consultation. I had been mechanically going for the umpteen blood tests which were rarely explained to me – neither the reasons nor the results. The single thing I was told was, we are going to leave the diagnosis as polyarthritis as we do not wish to label you with anything just yet. It was a major effort to get to the hospital, my husband had to take time off to drive me there, and then sit long past the appointment time as the clinic was always very busy. If you think that hospital chairs are good, try sitting in one when every bit of you hurts and find out what hell it is. It was most annoying that my visit itself lasted about 5 minutes and that I did not even get more than a cursory glance. In UK, you generally get referred to the local or nearest affiliated hospital for specialist care. Now-a-days one can ask to see another specialist for a second opinion. But it never even occurred to me to demand another doctor.

It dawned on me that I was taking on the ‘patient role’ as it was difficult to think and to be proactive and participate in my own care. I was accepting what was happening and being passive in my care. I think it was easier to just be and plod on, one foot in front of the other. Work was getting harder, especially when I had to drive in. All my modules were distance learning and all tutorial support was delivered online. This meant a fair amount of typing and was very taxing to my already swollen hands. Well then something snapped and I thought what is this? Why can I not get proper answers or indeed even a tentative diagnosis? What are all these blood tests telling?

So far my husband had been supportive but never accompanied me into the consultations. So I sat down with him and talked over the issues that I felt were important to my care. I wanted to know what the blood tests were and their results? Why was it that I had not been given any physical examination ever? I did not appreciate being treated like an ignorant individual who was just meant to follow directions blindly. I wanted to know what to expect in the short and long term. Yes, the list was long and we both agreed that these issues had to be addressed. It also did not help that after the first 2 visits with the consultant, I was seeing other members of his team and getting a different person every visit was not good for continuity of care. This time I asked my husband to come into the consultation with me and ensure all our concerns were aired by me. He was to remind me if I forgot anything or even speak for me if I got ‘stupid’ again.

I did manage to be assertive this time round. Indeed I asked the senior registrar if they had stopped teaching physical examination in medical school. I pointed out that as a health care educator I was used to teaching my students physical examination for symptoms like inflamed joints – looking at it for swelling and was it red, touch to see if it was hot and also take the joint through its range of movement to see what was the limitation. This time he actually carried out examination of all the joints and identified that the symptoms were indeed severe. Then he stated that they had been testing me for various autoimmune diseases like rheumatoid arthritis and Lupus, also checking for thalassemia. My hormones were showing that I was starting menopause, which can contribute to aching muscles and joints. He wanted to know where my x-rays of hands and feet were. I said you have never ordered any! He advised me to be patient as mostly these symptoms take time to evolve into a specific disease.

 Well that visit I got myself x-rayed and had more information. It certainly helped to have my husband accompany me as he remembered more of what was explained and also understood better what was happening to me. Well there was certainly a lot to think about. I had increasingly become allergic to more and more foods and cosmetics and various things, so the idea of autoimmune disease did not come as a tremendous shock. The x-rays showed hot spots (arthritic changes) on both the wrists and a little less on the feet. So back home with more ibuprofen and a little more information than before and a decision to try and find out more about autoimmune issues.

First Step to the Journey that is UCTD

One day I woke up to what I thought would be a usual January day, but little did I know that my life would be set on a path of radical change. I went over mentally the things I had to do in the day. As I was drying myself I felt this pain in my left index finger. I looked at it and found the first 2 digits completely white and then I could not feel the finger. I was slightly panic stricken as I rubbed it and held it up in the air trying to get the blood circulating. I totally forgot I was standing shivering in the cold still a little wet from the shower.

It was a good 5 minutes before the whiteness started receding and I hastily got on warm clothes and properly looked at my hands. Now they had been kind of achy as they get when it is cold and I have done a lot of typing, but when I saw my hands that day I was surprised to see them puffy and swollen, fingers and palms too. I do not remember seeing them swollen before but surely this did not come on within the night! I decided to get myself an emergency appointment at the doctors’ surgery. A late morning appointment brought out the findings of swollen and painful joints not just of the hands but also wrists, feet and knees. I was told to rest up and have some Ibuprofen to reduce the inflammation. Review to be in 2 weeks. I thought that’s not too bad, once the swelling comes down I will be fine.

The 2 weeks went by fast and there was little improvement in the swelling and pain and difficulty of movement and I just about managed to get myself to work and back. I used to drive 40 miles each way to work and with painful hands it is hard to change gear and with painful feet using the pedals is equally hard. The doctor this time made an urgent appointment with the local rheumatologist since she felt this poly arthritis had to be explored.

The visit to the rheumatologist could not come fast enough I wanted some answers and some relief from all this pain. But all I got was keep having the Ibuprofen which at this point was 200mg 3 to 4 times a day and we shall do some blood tests. Come back in four weeks as the blood test results would have come. However, this medication was barely touching my pain levels and even my face tended to look puffy.

The next visit, I am looking for some explanation by now, was very much like the first. There is raised ANA and ESR but we will still the diagnosis as polyarthritis for now. You feel the pain is not controlled? Well we can hike up the Ibuprofen to 800mg 3 times a day. I was taken aback as the instruction for over the counter ibuprofen is maximum 200mg 4 times a day or some such low dose. I was told that this was for arthritis and being monitored so I could take that which was truly the maximum dose.

Oh yes that medication brings its own troubles. The reason for care and monitoring this drug is that it can cause many side effects and the commonest one being heartburn and acidity leading to ulcerations. So alongside, one needs to have some antacids. First I was given Ranitidine and that was ok for a few weeks, then it did not cover me till the next dose was due. Therefore antacid was changed to omeprazole, which was once a day. Meanwhile, I was also had some short sharp bursts of steroids to manage the severity of the pain and inflammation. Now one had to remember that you cannot take omeprazole within 6 hours of steroids. Also that side effect of omeprazole is muscle and bone pain. Ahhhh I am back a full circle it seems. We have medication and then we have medication to take care of the side effects of that first medication whose side effects are the same as your symptoms. This is the crazy world and now it has become my world.

Circus by Alistair MacLean

This is a good story that is set in the days of the cold war. There is a formula for making anti-matter behind the iron curtain and using it as a potential weapon. The CIA wants to get its hands on it with a view that it is better in their hands than those of hard line communists. The problem is that this formula and its creator are in a well secured castle in East Germany. The CIA decides to recruit the renowned trapeze artist Bruno. He and his brothers form the daring and brilliant trapeze troupe, the Blind Eagles, where they perform blindfolded up on a high wire.

The arrangement is to get the circus with its cream of performers to tour Europe with many shows in the countries behind the iron curtain. Sadly even before they leave for Europe tragedy strikes and warns that their plans are known to the enemy. The CIA also sends 2 operatives with the circus, one as the doctor and other as the secretary to the owner of the circus. The plan is that this young lady will be the go between the owner, the doctor and Bruno so they do not have to communicate in the open.

Why is Bruno keen to do this suicidal job? Is this is revenge for the death/disappearance of his family? The plans are half formed and pretty near impossible. While the circus gets a lot of positive publicity, the thought of what is yet to come seems to make everyone, except Bruno, edgy. The usual cloak and dagger stuff of bugging, listening devices, shadowing are all in full force right from the onset. What will happen when they actually get to see the fortified castle and realise the enormity of their task? What happened to his brothers on their way to Crau? Will they find what they have come for? Will the secret police manage to capture them and use it to denounce the West? The daring feats of the circus and showmanship are well detailed and maybe make it more glamorous than it was, but the wonder and delight at this fantastic world is evident in the writing. The action is low key but it is a nail biting finish.

What can I say? Alistair MacLean has always been one of my favourite authors as his was one of the first ‘older person’s novel’ I read as a teenager. Since then mystery and thrillers have been my escape into the fantasy world. I hope you enjoy this book as much as I did.