Saw my rheumatologist

SusiM

So my rheumatologist appointment finally came around. I had been looking forward to getting some answers. My bloodwork doesn't show signs of anything but based on my symptoms they have determined that l have an inflammatory autoimmune condition. She instructed me to continue on the plaquenil and add 5mg prednisolone. I told her lm uncomfortable with taking the prednisolone. She said she wanted to deal with my symptoms. It is a small dose but l can't say l understand her approach. She said that later she might introduce meth. She couldn't tell me what's causing all my other random symptoms (nobody can really). A positive is that the prednisolone will probably alleviate these symptoms but only mask them. I guess l was hoping l would have more answers. The rheumatologist was lovely but sooo young -25ish and she had to relay her protocol to her boss. I wanted to ask her if she was fully qualified but she seemed a little nervous l didn't want to embarass her. I was hoping l would have someone more experienced but she was thorough and did what anyone else might have so l can't complain.
Thankyou for supporting me during this challenging time t4591

stickywicket

No problem. As the ad says, 'you're worth it'

I think on the whole it's a good appointment. I like docs who are honest and don't try to imply they have all the answers. I also quite like young, new ones as they tend to be more clued up with recent trends and studies.

Yours has a plan and I quite like it. OK, none of us wants long term steroids but that's not what she's proposing. And she has a Plan B with the meth. (What's the steroid dose?) It's true that steroids are used for many things and you might find other symptoms clearing up. They can seem magic and I can see us, here, in future months, trying to persuade you to come off them

SusiM

Grace - wow 35yrs is a long innings. I will trust you when you say l shouldn't worry too much about the meds. I'm trying not to but l think lve done a bit too much reading and scared myself off. Having steroids before your holidays is a great idea. I'm going to keep that one in mind and yes l think l will definitely enjoy the break they will give my body.
Thanks so much for your encouragement.

SW- the prescribed dose is 10mg then dropping down to 5. I'm wary of steroids because my mum has been on them 15yrs for an autoimmune liver condition and lve seen how they've affected her whole body. But with me it's a much smaller dose and hopefully short term. Tell me if l have this right - prednisolone reduces inflammation but doesn't actually modify the disease??

stickywicket

These days that's a small dose which should help a lot without producing unwanted side effects.

Here's what the NRAS (valuable site) says about their use with RA. https://www.nras.org.uk/steroids-in-rheumatoid-arthritis .Good luck and don't do any bungee jumping

dreamdaisy

Pred works by thinning all bodily tissues, not just the inflamed ones. The downside is they make you feel so much better you think you are but it only masks what is going on, it does nothing to address the underlying causes of the inflammation.

I wonder if part of the cause of your current nausea is tension due to not knowing what is going on. You have also added to it by googling and probably convincing yourself you will have side effects if and when you are offered something stronger (but less damaging long-term than pred and that will also address the issue of your over-active immune system). I have no trouble with injected meth apart from feeling a little more tired than usual once in a while. That may be a way to minimise your fears of potential nausea as of course the digestive system is bypassed: the injections are very easy to do. That bridge has yet to be crossed, however, let's see how this plan goes. DD

SusiM

DD can you please tell me a bit more about your fibromyalgia. How does it feel and are you on meds for it? I was wondering if I might have it also. The best way l can describe it is my flesh hurts....like when you have the flu and it hurts if someone touches your arm. My skin is super sensitive plus l have the nausea and other things but l don't know if fibromyalgia is more of a deep muscle pain??

dreamdaisy

How does it make me feel? Lacklustre, no concentration, no interest in anyone or anything, no focus, tender all over, tired. Anti-depressant meds can be used, I started them before it was diagnosed so woo-hoo on that front. Exercise is helpful but not a cure. No-one is sure why it happens and some docs don't believe it exists (probably the ones who also think ME or chronic fatigue are made up) and I was surprised to be diagnosed. Doesn't usually bother me but it's bad at the moment, possibly due to my swap in meds for the PsA.

I've just read your reply to someone on Say Hello where you mention you have given up smoking. Well done on that (I gave up when I could no longer reach the one tobacconist who sold my favourite Frenchies) so that could be another reason for your general malaise. Odd, innit? You happily inhaled costly poisoned smoke for some time but don't like the thought of meth.

SusiM

Haha yes but l enjoyed the ciggies and prob won't the meth
Yes l feel all those ways also, my brain lives in la-la land these days. I'm just not sure if my pain is like fibromyalgia pain. It's like lm really sensitive to touch and cold. Two diseases at once does sound about my luck :?
If it is a diagnosis is hard to get and from what dr-google tells me meds for fibro are not that hot :?

dreamdaisy

I think you are going to have get used to the idea that there are some conditions which never go away, which cannot be eased by pills, injections or eating five tons of turmeric a day. We are sold the idea that good health is a basic human right to which we are entitled: an utter crock of faecal matter. Many are happy to sell us further utter crocks of faecal matter to make us 'better'. Yeah, right.

I forgot to say I run very hot as a result of the fibro so every handbag contains a fan and a dry flannel or two for mopping up. I dream of being cold, at least you can layer up and move around to generate some body heat. There are days when I want to remove my skin to let out more heat. :roll: DD

daffy2

Susi, in the course of your googling have you come across the FM charity? http://www.fmauk.org
I've not felt the need to join an online group for my FM as it's not generally the most troublesome of my health issues, but I know it's there. There is also a local group in my area, but it's FB based which I don't do, but again I could access that line of support if I felt it necessary.

SusiM

daffy2 wrote:

Susi, in the course of your googling have you come across the FM charity? http://www.fmauk.org
I've not felt the need to join an online group for my FM as it's not generally the most troublesome of my health issues, but I know it's there. There is also a local group in my area, but it's FB based which I don't do, but again I could access that line of support if I felt it necessary.

Thanks Daffy l might visit it while lm on FB visiting other groups for illnesses. The last 6 months l plummeted from perfect health to constant pain and discomfort and visiting illness groups such as this one. It sounds depressing but l find other people's experiences insightful to my own.

SusiM

dreamdaisy wrote:

I think you are going to have get used to the idea that there are some conditions which never go away, which cannot be eased by pills, injections or eating five tons of turmeric a day. We are sold the idea that good health is a basic human right to which we are entitled: an utter crock of faecal matter. Many are happy to sell us further utter crocks of faecal matter to make us 'better'. Yeah, right.

I forgot to say I run very hot as a result of the fibro so every handbag contains a fan and a dry flannel or two for mopping up. I dream of being cold, at least you can layer up and move around to generate some body heat. There are days when I want to remove my skin to let out more heat. :roll: DD

DD l haaate being cold as it causes pain in the bones...wanna swap
You have said this to me several times...that some things don't have a quick-fix cure and lm constantly chasing one. I want a medicine for everything lm experiencing but then again lm wary of most meds
So what do l do? I may have to accept that pain and discomfort is now part of my life and learn to live with it.........but l don't want to.

dreamdaisy

You've been spoiled by good health which has not prepared you in any way for its loss with the beginnings of another reality. Health is not a matter of choice, it has nothing to do with what you do or don't want. I'm not overly fond of being as I am but it's all there is. As for your kind offer of the bone pain, I already have it. My shins are the worst, I used to pooh-pooh my Ma when she complained of painful shins, just like everything else it turns out she was right. You have no idea how exasperating that is.

From your family history you were always at a higher risk of starting something. auto-immune so to me it's no great surprise but, like all healthy people, you took it for granted, happily abused it, probably moaned like stink when it was temporarily interrupted by a cold or a bug then resumed as usual. Life has slapped you in the face. Slap it back by getting on with it as best you can, ignore the needy and weedy because they are not you, do not have your life history of experiences, attitudes or physiology. They are a drain on your time, your emotions and your psychology at a time when you need them for yourself.

Much of living with any chronic condition comes down to helping oneself, there is only so much the docs, the meds and the physios can do. If you have some form of auto-immune inflammatory condition then concentrate on getting it under control so you can begin to feel better. You will love the pred because it will perk you up and sometimes that is what is needed. It has a role but it is not an answer, just like the meth, leflunomide, cyclosporine, sulphasalazine, hydroxy, planquenil and all the rest of the stuff we swallow and inject. I view the meds as enablers, they help me to make the best of what I have even though that is dwindling, day by day, as it does for all humans as they age. DD

SusiM

dreamdaisy wrote:

You've been spoiled by good health which has not prepared you in any way for its loss with the beginnings of another reality. Health is not a matter of choice, it has nothing to do with what you do or don't want. I'm not overly fond of being as I am but it's all there is. As for your kind offer of the bone pain, I already have it. My shins are the worst, I used to pooh-pooh my Ma when she complained of painful shins, just like everything else it turns out she was right. You have no idea how exasperating that is.

From your family history you were always at a higher risk of starting something. auto-immune so to me it's no great surprise but, like all healthy people, you took it for granted, happily abused it, probably moaned like stink when it was temporarily interrupted by a cold or a bug then resumed as usual. Life has slapped you in the face. Slap it back by getting on with it as best you can, ignore the needy and weedy because they are not you, do not have your life history of experiences, attitudes or physiology. They are a drain on your time, your emotions and your psychology at a time when you need them for yourself.

Much of living with any chronic condition comes down to helping oneself, there is only so much the docs, the meds and the physios can do. If you have some form of auto-immune inflammatory condition then concentrate on getting it under control so you can begin to feel better. You will love the pred because it will perk you up and sometimes that is what is needed. It has a role but it is not an answer, just like the meth, leflunomide, cyclosporine, sulphasalazine, hydroxy, planquenil and all the rest of the stuff we swallow and inject. I view the meds as enablers, they help me to make the best of what I have even though that is dwindling, day by day, as it does for all humans as they age. DD

Thanks DD your wisdom is much appreciated. I know you're not a mum but you have the wisdom of one. Yes the Pred has perked me up. Yesterday for the first day in months l had the will to converse with someone, l wasn't as consumed by my pain. But lm not a fan of the chemical high because what goes up comes down again. For now l will take it as a much needed break.

dreamdaisy

Random thought in the early hours: have you had your thyroid checked?

Thank you for your kind words, my Ma would find them hugely amusing. She oftened moaned I was too like my father to which I had one reply I gave and one I thought. She heard 'That's nothing to do with me, he was your choice.' while I thought 'Thank whoever for that!' DD

PS. Keep in touch, let us know how you're getting on.

SusiM

dreamdaisy wrote:

Random thought in the early hours: have you had your thyroid checked?

Thank you for your kind words, my Ma would find them hugely amusing. She oftened moaned I was too like my father to which I had one reply I gave and one I thought. She heard 'That's nothing to do with me, he was your choice.' while I thought 'Thank whoever for that!' DD

PS. Keep in touch, let us know how you're getting on.

Haha you're too funny DD. At least your dad must have been happy to have created a copy of himself. I bet you were a handful! (In a playful kinda way)
Yes l have had my thyroid checked and everything else on top. I've had so much blood taken lately lm surprised lm still standing!
Theyve given me lyrica for nerve pain but lm feeling really woozy on it. I wish l could be one of those people who just cuts out gluten, does some Pilates and gets all better. Many of them are selling their protocol online.

dreamdaisy

In my opinion those people never have anything medically wrong, all their symptoms are nicely nebulous and vague and they choose to interpret this ordinary stuff as dramatically life-limiting (I remember someone on here who couldn't pin down her symptoms to just one thing, nodded off whilst walking her dog and self-diagnosed narcolepsy). They peddle their neuroses for all to read - social media-enabled hubris. I guess I lack that vanity, I'm quite content being a nobody.

I was never a handful as a child, too ill and too timid. Here I am at 60, still ill and the timidity is nearly a thing of the past. DD