I’ve got in touch with the rheumatologist ( about the weakness getting worst ) he just told me to up the dose of cortisone until he sees me on the 11 July , I don’t think they working though, the more I up the dose the weaker I feel , I’m worried in case the problems I’m having are something else and they saying lupus as a easy way out . My father died of cancer and this how it started , feeling weaker and weaker out of breath and then died after few months .
Sorry everyone but I’m really down and scared at the moment, I don’t trust any doctors , my legs feels like jelly , short of breath, headache, ringing in my ears , confused.
Thank you xx
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Melaxx
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Have you mentioned these symptoms to your GP? Perhaps they could do some blood tests? Do you know whether you may be anaemic? This is very common in people with lupus and can cause symptoms like weakness, fatigue and shortness of breath.
Hi, I had blood tests done and apart from the ck inflammation super high 3500 all the rest was fine ( the dr said) I’m going back to see a gp on Thursday maybe i’ll Ask about that and to print my last blood test .
I’m so sorry that you’ve lost trust in your doctors. That’s no fun place to be. I feel like I’ve been where you are and even watched my arm muscles waste away, blurred vision, cognition problems. Soooo short of breath. Doing laundry made me feel like I ran a marathon. I couldn’t titration up on HCQ without palpitations. Come to find out, most of what I was feeling was due to steroid side effects. I was placed on a medication to slow my heart which allowed me to increase HCQ to a dose that actually worked. Steroids at high enough doses can cause myopathy (break down of muscle). I feel like steroids can be a double edged sword. I hope things work out for you but if you’re feeling worse with an increased dose, this can’t be the solution. Make sure to let your doctor know that more steroids have made symptoms worse. Hang in there!
If your elevated CK is due to an autoimmune process, increasing steroids sounds like a sensible idea, and the time between now and your rheumy appointment may be useful in terms of being able to assess what response you get. I dont know if you are ikeeping a symptoms diary, but that might be handy for the next couple of weeks?
But generally, it seems like you are not happy with the explanations you've had from your doctors? Since you will be seeing both GP and rheumy soon, would it be useful to write down the things that are most worrying you and ask for direct answers/explanations from each of them? Especially the worry about cancer - that's something I'm sure both of them will be used to hearing from patients, as it's an understandable and common worry people have when they are so unwell over a period of time.
Meanwhile, maybe use some anxiety management techniques - calm breathing, relaxation, etc - I expect you know the things that work best for you. Do let us know how you get on anyway x
I am sorry. I can only offer my advice that reducing my anxiety with diet, therapy and gradual exercise has reduced my terrible fatigue and muscle weakness. I think many flares are caused by our anxiety and depression.
Are you up to date on mammograms, colonoscopy and yearly gyn exams? Have you had a ekg. If you have a history of smoking did your GP run a lung cancer screen? If yes than I would rule out cancers. If not you could inquire about following the American cancer society cancer screening protocol to put your mind at ease.
You mention the loss of your dad and then this extreme health anxiety presently. Are you pursuing ways to treat these traumas? If not it might help lessen the length of this present flare and the use long term coping skills are proving to be helpful in preventing future flares in autoimmune patients. Treating illness caused depression and health anxiety is proving to be very helpful when coupled with steroids and HCQ treatments. Stress and depression are both believed to be a cause of inflammation as well as a result of it. Treating the inflamation with drugs, exercise and diet seem to help anxiety while at the same time treating anxiety and depression are shown to lessen inflamation as well.
hi, sounds like the steroids but you do need to check with your doctors. sometimes they do know better than us, other times they need a nudge in the right direction
Hi Melaxx. I'm really sorry that you’re feeling so down and scared at the moment. Everyone here will know exactly how you feel, because we all go there too, at times. So you’re not alone and have come to a wonderful place to get help support...I certainly did.
You've already had some really helpful replies but I've just had a thought...I note that you take cortisone and have also just had your dose increased. So...
Any form of steroids can cause low potassium levels. And the symptoms you describe can sometimes be caused by low potassium. So just wondering if your GP has checked your potassium levels recently?
Don't worry if you do have low potassium levels - it's easy to treat. But it’s also prudent to say that if low potassium is involved (though I'm not saying it is), there are instances where swift treatment is required. So...if your symptoms get worse (or suddenly worsen), then it would be important to seek swift medical attention so that the low levels can be raised quickly.
Hasten to add, this doesn't happen to everyone who takes steroids so may or may not be relevant. Mentioning it just in case it's a 'missed-trick', because I've just been caught out by this!
I'm going to be eating lots of potassium rich foods in the future...don't want to get caught out again because it made me feel quite horrid (even more so than usual).
Please take very good care. It would be good to hear how you get on.
Are you on Hydroxy? It could be a hydroxy induced myopathy. It's a well recognised side effect. The hydrox sequests itself into tissues, which is why it takes 6 week to work, but it can continue to accumulate & cause problems.
I had this & your symptoms sound similar. My GP kept upping the steroid dose with no effect. I got weaker & weaker until I struggled to lift a cup of tea.
A simple EMG will detect a recognisable pattern, possibly an MRI to check for myositis.
Came out of the blue for me after 2 years on Hydroxy. Now I take a reduced does or take a hydroxy holiday.
Yes I’ve been on hydroxyl for many years 200 mg a day , I have regular eye tests but I never been told about other side effects, thank you I’ll mention it to my Gp on Monday , after talking to the wonderful staff at PALS they got in touch to my surgery and brought my appointment forward and bc I’m a bit shy and I find my Specialist a bit intimidating to talk to they’re going to send him an email with all my concerns . If anyone out there is totally frustrated with Dr , Specialist , delays appointments etc , get in touch with PALS ( patient advise liaison service) they are amazing and they act very quickly.
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