New here and having flu like symptoms

SusiM

Hi
I was diagnosed with what is most likely RA one month ago. Its been an emotional time accpeting l have this chronic disease and being afraid because l witnessed what it did to my aunty who was very disabled by it.
I was put on plaquenil which is supposed to be mild and not nasty so l was happy about that. Ive been experiencing flu-like symptoms for a few weeks which is getting quite severe. My GP thinks it might be the meds suppressing my immunity thats causing this. I will call my rheumatologist today with view of ceasing plaquenil. Its disappointing because they take so long to work as it is and if the GP is right wouldnt any dmard have the same effect. Maybe l jusg need to ride it out until my body adjusts but these flu like symptoms are harder to live with than the pain.
Has anyone else had this problem?
Thanks for reading

dreamdaisy

Hello, I saw your post on 'Say Hello' but don't want to type the same stuff twice.

I am so sorry you have had this diagnosis, especially as you are coming at this from a healthy background: sadly that prepares one not one jot for what is happening. I am not sure how much you have been told or how much has been explained to you by your rheumatologist but RA is caused by an over-active immune system, leading the body to attack itself. In order to reduce disease activity, slow its progress and minimise joint damage the meds 'work' by suppressing the immune system. There is no other way of doing this and it is not a cure.

I began my auto-immune arthritis (a different one to yours) back in 1997 and for various reasons did not start the meds for five years. I am sure (and I have seen for myself) that the quicker the diagnosis and the sooner one begins the meds the better the outcome will be. The time scale for the meds beginning to take effect (as shown in blood test results) is anywhere between two and twelve weeks. Over my arthritic years I have tried many, and had some bother with side-effects, but only gave up with one DMARD, leflunomide, because it gave me headaches that rendered me bed-bound. For others it has worked miracles and this is the trouble: it can take some time to find the right medication (or in my case combination of meds) to bring things under control.

I can sort of understand your reluctance to take the medication (I say sort of because I have never known good health, have had to take daily medication for forty eight years and for me this is just more of the same) but do not underestimate the damage uncontrolled RA can do to the whole body. The meds are fairly recent inventions, and they have made a tremendous difference to many lives, but to feel their benefit sometimes takes great perseverance on the part of the patient.

This must be a very bewildering and scary time for you, RA runs in families thanks to its genetic aspect and I am sorry it has begun to affect you. I am supposing that the meds maybe came a little late for your Aunt? DD

SusiM

Hi Dreamdaisy (cute whimsical name)
Thanks for your response.
Now that l think about it l dont think its the meds causing these flu symptoms because they started mildly before the meds. So thats good and bad. Good that l can continue with the meds and bad because it may be a symptom of the disease. My GP said its not and l havent heard many people talk about flu-like symptoms. However every body works differently. I hope this passes because its hard to tolerate. My worry is that l have a secondary condition. When it rains it poors
If anybody has experienced flu-like symptoms in the beginning or later please share

stickywicket

Please excuse me for being vey brief. I'm ready for bed. Fatigue is characteristic of inflammatory arthritis when it's flaring. When I started, aged 15, I was only allowed to do one O-level per day. I spent the rest of the day in bed. There were no DMARDS then.This will explain about fatigue and flu-like feelings https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/ Frankly, your GP doesn't seem to know much about inflammatory forms of arthritis or our meds. Of course they depress the immune system. They have to. As DD says, our whole problem is overactive immune systems.. Sorry, I really need my bed now. Not flaring, just shattered after a busy day

vickyp

I am new around here too SusiM. I have OA which is pretty different so I am not on any meds on daily basis, but do notice that when I have flare ups that I feel flu-like too. Sometimes I think that something has gone seriously wrong inside my body. I have been saying this for 5 years but nobody in my everyday world, especially not my GP, seems to get that. People believe pain is limited to the joint but in my experience during flare-ups I feel generally unwell. I imagine that it must be much worse with the inflammatory RA condition. It does make me wonder if GPs have any clue of what it is like to live with chronic conditions.
.

stickywicket

vickyp wrote:

It does make me wonder if GPs have any clue of what it is like to live with chronic conditions.

I'm sure they don't but, there again, how could they? When doing Riding for the Disabled I gained a little insight into how it must be living with Multiple Sclerosis, Muscular Dystrophy and hemiplaegia and stroke but we can't really understand these things until they affect us. I still have to make a big effort sometimes to understand how my arthritis affects my husband and how he feels about it. Communication is everything.

The best GPs really try to understand but they, too, are human beings with very limited time per patient and, in the case of arthritis, there's not a lot they can do. Which probably makes them dread our appointments

dreamdaisy

Until they do so, nobody understands what living in (and with) chronic pain is like. I have been in increasing pain since 1997, my husband has witnessed every faltering step of my decline, yet still asks 'Are you in pain?'

In his world of physical luxury pain is a temporary thing; he has gout, which occasionally flares (and is also on the auto-immune spectrum of inflammatory conditons). He takes a few days' worth of naproxen, the gout clears, so does his pain. As he sees it I am taking the meds so I should be fixed so not in pain. DD

SusiM

Thanks everyone for your responses. I have a good doctor but l find with docs in general they assume they know your body better than you do. I know something is seriously not right with me. I cant even take a shower without my blood pressure dropping and feeling really faint. The doc will explain it away as prob something inaccurate.
Vickyp l sympathize with you and relate to you. I feel the docs are missing something with me. I watch my health gradually decline and theres not a darn thing l can do about it because blood tests arent showing anything.
Wish you all well m0150

SusiM

Thanks everyone for your responses. I have a good doctor but l find with docs in general they assume they know your body better than you do. I know something is seriously not right with me. I cant even take a shower without my blood pressure dropping and feeling really faint. The doc will explain it away as prob something inaccurate.
Vickyp l sympathize with you and relate to you. I feel the docs are missing something with me. I watch my health gradually decline and theres not a darn thing l can do about it because blood tests arent showing anything.
Wish you all well m0150

SusiM

My blood pressure is dropping and lm feeling really faint when l do a task like take a shower. I dont know if its RA related. Also getting hot flushes. Im not in menopause. Could these odd symptoms be RA related? Im concerned l have something else.

Mclean70

Hi SusiM

Hope this helps.

I was diagnosed early last year with inflammatory arthritis. I suffer with swollen painful joints. Knees, hips, ankles, elbow, shoulder and puffy hands and wrists. I also suffer with bad fatigue and flu like symptoms. Feeling achy all over like a flu when I just try to put a washing in the machine, then having to rest and take cocodamol. Or having to go back to bed after a shower in the morning,as feeling faint or exhausted. ( I now have a stool in the shower) I also have hot flushes but I think they are caused by a different medication I take for something else. I had these symptoms before I started my arthritis treatment regime, (which is still being changed and adjusted.) And still have these symptoms. I am still learning about this condition, but I think it can be common for people with inflammatory arthritis to have severe fatigue , which is way more than just being very tyred. And can feel like a flu.

But if you are worried you should discuss with your rumatologist.

[emoji171]

Sent from my SM-G965F using Tapatalk

SusiM

Hi Mclean
I can really relate to what youre saying. Most tasks these days require much effort and my bllod pressure drops, l feel faint as you said. My gut tells me that it is RA related but the doc and rheumatologist seem baffled by my symptoms so lm unsure. Ive read that fevers can accompany RA so this is similar. I hope your symptoms ease once the meds take full effect. Thats what lm hoping for. Its hard to adjust to feeling so unhealthy. My cousin has RA and doesnt have any fatigue or any symptoms aside from the pain. It affects everyone differently. Fingers crossed our meds can make things easier for us.

dreamdaisy

No two people have the same disease in the same way because everyone's physiology is unique. There are also other factors to take into consideration such as how long has your cousin had RA, what meds are they taking, do you know much about how their condition is affecting them or have you not given it much thought because it wasn't affecting you? The latter is a normal and natural human response,we never think about things like this because they are things that happen to other people. On this occasion you are 'other people' and it won't sit easy on you.

My auto-immune arthritis causes different damage to that of RA but I am lumped under the same umbrella. It's more convenient I guess. DD

SusiM

So l had another appointment with my GP and all tests have come back normal. He has tested me for everything he can think of. He referred me back to the rheumatologist and she couldnt offer anything new. Every day l hope to wake up feeling better and its not happening. So lm stuck feeling so sick that its a daily battle but not sick enough for emergency. I hate feeling like this. I wonder if this is just how l experience arthritis. Im hoping its something else because l want a solution. Darn sloppy health! t2507

stickywicket

To me, it all sounds slightly out of kilter.

You say your GP and rheumatologist can find nothing wrong.

Does that mean that the blood tests show your inflammatory levels are fine and the arthritis is well-controlled by just plaquenil? After only 6 weeks or so?

And, when your GP says all is well, is he / she not concerned about your low BP?

Have you actually measured your BP at times when you say it's dropped? Are you sure that's what's happened? Or is it just that it feels like that?

And are you 100% sure you're not menopausal? That can do weird things to people.

Sorry, I don't mean to be intrusive. Please feel free to ignore my post if you wish and you certainly don't have to answer these questions on here. I'm just trying to give you food for thought.

SusiM

Hi SW. No youre not being intrusive....All food for thought is appreciated at this point. My inflammotory markers were only a little high to start with but the pain lm experiencing hasnt reduced much with the plaquenil.
My GP knows that somethings not right just that bloods arent indicating what it could be. Yes my BPs definitely dipping but l also feel heavily exhausted so wonder if its related.
GP tested for menopause and says its not that....l was hoping it was so l could kill two birds
Thanks SW

SusiM

Speaking of plaquenil. After reading more about meds lm surprised l was only given plaquenil. From what l understand in early stages they ususally give you something strong to try to nail the disease. Im not sure lm happy with my rheumey. At my first appointment because she was running late she spoke a million miles a minute. My compromised concentration span could barely keep up :roll:

dreamdaisy

Rheumatologists vary in how they approach matters. My first med was sulphasalazine which did nowt so tablet meth was added. Others are put straight onto meth but it is horses for courses: as there is some doubt as to what is actually going on with you the first medical rule certainly comes into play, viz do no harm. In my case there was no doubt that an inflammatory auto-immune something was going on but what, out of the three hundred or so options available to choose from, was the sticky issue.

I have never read up on the meds and never will. I do not have the background, the training, the understanding or good enough knowledge of human physiology. I feel for you, I suspect that until now you have enjoyed the luxury of ignorance in terms of medical matters in that whatever has happened to you previously has got better, gone away, been cured. Now you are confronting the very probable reality that you have something that does not play by those comfortable and comforting rules. DD

stickywicket

Thanks for your understanding, SusiM.

I'm afraid that's me out I've no idea what I'd do next other than try to live with it, forget about it as much as possible, do fun things to take my mind off it and, if nothing has helped by the time of the next rheumatology appointment, make sure the doc knows.

And I'd get a shower stool just in case my BP dropped while I was in there.

SusiM

Hi DD
Same issue with me. They know its an auto-immune arthritis but so many to choose from which one would l like :roll:
I like to inform myself as much as possible about the meds l take so lm aware of side-effects and options. Meds are necessary poisons but plaquenil is quite mild. I think its like you said she is trying to do no harm but has underestimated the pain lm actually in.
Yes it has been hard adjusting to this and accepting the possibility that there are no answers but lve been through harder things in life so this too shall pass.

Hi SW
Thats good advice l think. I definitely feel a lot better if l try to keep busy in between resting rather than lay on the couch feeling sad and sorry. Like DD said l may have to accept that there is no answer and adapt. Im getting used to resting in between activity. Making people understand is tricky. Everyone thinks arthritis is just pain. When you tell them you have other symptoms they dont get it. I guess they can learn to adapt, believe and compromise (like me)

dreamdaisy

What it is is irrelevant - the meds are the same. I was un-specified for years until my body helpfully obliged with a bout of psoriasis then suddenly it was PsA. That was the only change, I stayed on the same meds at the same dosage and I'm still written up as having RA.

The general public are general idiots when it comes to arthritis, I know that because I was one of that number until I had to learn. Everyone 'knows' that arthritis comes in two kinds (OA & RA), only old people get it, and you walk with a stick. Dah-dah! That's all you need to know about arthritis in the wrong nutshell. The difference between ignorance and stupidity is that ignorance can be remedied. I was also an idiot when the OA was diagnosed in addition to the other, even though I was a member on here I had not yet learned that one can have both.

If people are genuinely interested in what I have and how it affects me I tell them, if they're not I don't. (Pig singing ) Another important skill to learn alongside acceptance is how to brush off with charm, tact and style the stupid, uninformed, unhelpful and downright insulting advice on what to take or do to 'make it better'. That is far harder. DD

SusiM

Ohhh thats so true DD. My 'all-knowing' friend has been telling me how l can 'fix it' by eating better and moving up north where its warmer. She told me her sister has RA but is much better since moving north and only takes medication when she needs it. It took some self-restraint not to get into reasons why my immune system wont respond to the weather and stop from asking her how her sister only takes meds 'when she needs them' since they take months to work. Arrgghh! I guess l'll get used to well-meaning ignorant people

dreamdaisy

I suspect your friend is talking about OA which does improve in warmer climes and for which medication (probably merely pain relief) can be optional. The ubiquity of arthritis works against it, people do not understand what the immune system is capable of doing when it misbehaves and that it is not involved with OA. The luxury of ignorance . . . . I suppose like many with luxury items they like showing it off. DD

stickywicket

My thoughts were exactly the same as DD's. Your friend heard 'arthritis' and presumed there was only one kind. If only!