I'm just coming out of a heavy cold and today I made a decision that I'm going to stick with if I can.
So recently all the uncertainty of my symptoms and meds and being passed about by specialists who won't commit has just got me into a terribly anxious state. Over the past year I've been to gp and demanded referrals to physio, ENT, dietician, sleep clinic, gastroenterology and most recently to dermatology. I had an expediated Neurology appointment in November because I knew my SFN was progressing. It appears to have got me nowhere and the lack of communication from her since has been driving my BP up and making me distracted and obsessive.
I have a really good new GP but she only works 2 mornings a week as she's also a hospital doctor. She was really mad about the way I'm being passed about and promised to try and sort it out for me. I will see her again in a week for update on how we've both got on. Meanwhile she asked me to check my BP 3 times daily three days per week for a month. I've been doing this and find that my diastolic (the lower reading) is often over 100 despite BP meds - average reading 136/96 - pulse too high. I'm blaming the anxiety mixed with virus. But I'm on loads of meds and am overweight so I realise something about my lifestyle and stress levels have to change.
I saw the dietician yesterday and she surprised me by saying my diet is okay but I need to ask my doctors if the hypertension is essential or whether it's secondary to Sjögren's related kidney involvement. We will think about dietary changes once I've had Barium swallow next week and seen gastro again.
I go away and think about what she asked about renal problems and which comes first. I get my recent hospital bloods out, ignoring the vascular doctor's letter querying whether Cellcept is beneficial for me. I observe that in the year since I've been on Mycophenolate my ANA has gone from 1:320 to 1:160. My IgG has gone from above range to under range and same with my Creatinine level. I no longer have trace blood in my pee. And until the virus of last week my BP had settled down a lot too. My eGFR is always gt60 so I look this up and see that this shows stage 2 kidney disease.
So why does this vascular doctor never mention this or notice that the Cellcept may actually be helping prevent kidney involvement? As they aren't going to offer me anything else due to my negative antibodies I'm resolved to stay on it!
Next up is a new med I've been put on by my new gastroenterologist called Constella (Linaclotide). It's for my chronic constipation. It appears to be working like a dream! No more abdominal pain, less bloating and no diarrhoea as warned. Just relative normality without the usual daily stimulant or osmotic laxatives.
So today I resolved that I'm going to try and stick with the combination of Cellcept and Linaclotide. My monthly FBC is always good and I need to stop the state of permament anxiety in its tracks. There's nothing more I can do to stop the widespread SFN and autonomic dysfunction from progressing I'd the want to. so I have to stop fretting or I will go the way of my parents with heart attacks or a stroke.
The neurologist will only see me once a year and same goes for the rheumatologist. All I can do is try and keep my blood pressure down and my diet as healthy as possible and learn to pace, get daily fresh air and a dog walk on the beach. And I can tell them all I'm doing just fine on this combination of meds and lifestyle. Because SFN and dryness of eyes and mouth won't kill me - but worrying surely might!
I saw my
I would guess that you are right. It seems that the Cellcept is working for you and the new med for bowel is helping. It is very wise of your doc to have you check your blood pressure often. It gives a good picture of your numbers. The bottom number is elevated and your doc will address that I will bet. I know this because my hubby had high blood pressure from age 38 til he died at age 75. He had a high bottom number too and in later years was put on 3 different blood pressure meds at lower dosages. This way he had the good effects of all the meds with less chance of the bad side effects from high dosages.
He managed to do well in the blood pressure department in spite of many other issues. I am glad that you are working at controlling stress. I suffer from stress frequently, especially with old age and so many changes in my life. Hope you can find a hobby or somethin to take your mind off things.
With the chronic disease feeling lousy becomes a way of life. Hard to believe but we can adjust to this and manage to carry on in spite of it. That is because we learn to be tough and endure. Good luck and keep us posted on your blood pressure. Irish
Sounds like you have a mixed bag lately, MAT - some positives and some negatives.
Have you considered vitamins D and B deficiency and supplementation for neuropathy prevention and treatment? I haven't looked into contraindications for meds you are taking, but you should take that into consideration, too, if you want to try supplementing.
Thanks Irish and SD,
I appreciate your sympathy and so sorry you lost your husband relatively young Irish. Both my parents dropped dead of heart failure at 73 but they achieved so much in their lives that it seemed quite a good way to go for them in retrospect. I'm philosophical about this as I see my mother in law hanging on to life in a state of gloom and pain and morbid introspection at 87 and that doesn't seem great to me. But I don't want to have this happen at 55 when I've 3 wonderful young men sons and a great hubby and lots of ambitions left so I'm resolved to try and get my hypertension sorted - although I've read that the lower number diastolic is less ominous. Unfortunately I couldn't hack the other BP meds I tried but maybe my GP will think of something. She seems quite concerned about this and my family history.
I think you're right we do adapt to our chronic stuff. The thing is that I guess doctors know this and kind of give up trying with Sjögren's. That's what I feel anyhow - they never say it (can't prinounce?) so just refer to it as "your condition"- which doesn't inspire much confidence?! I have to say it was less isolating and much easier having a misdiagnosis of RA in some ways as it's got established treatment pathways and is such a known quantity. With Sjögren's I'm under so many specialists who have no concept that it's so much more than dry eyes and mouth so they don't join the dots properly.
I avoid supplements now having found out that my B12 level was soaringly high recently - although I do take AdCal D3 on prescription after confirming but D deficiency four years ago. I'm really confident that the neuropathy is not due to a deficiency but is due to Sjögren's/ autoimmunity as I am Hypothyroid too. My diet is very wholesome and balanced so I feel this should be enough. I just have lousy genes health wise!
I'm sorry you're having so much trouble with getting treatment, Mat51. I can't comment on your medication but have you tried mindfulness + meditation. It is not flaky, it is very straightforward, it would only need around 20 mins a day, and it has been proved to have physical as well as psychological benefits.
Thanks Araminta. Honestly I don't need mindfulness. I'm an artist and I get my calm from working and listening to BBC radio and walking my dogs on the beach or in the park . I can't get my balance very well so I need open spaces and a soft surface in case of falls lol. I do Pilates class once a week normally and that helps too but unfortunately I've had a heavy cold so have missed the last two classes. just need the neuro symptoms to stop progressing for a while and things will be good!