Tapering from 60mg of Prednisone.....

[spoof99]

I started at 60mg on January 27th and have been tapering for 4 weeks now started at 60mg and just started at 30 mg this morning...I have noticed a couple of minor aches later in the day which is not surprising...one thing that did get my attention is some sharp pain in my teeth on the right side...This started last night it was not constant and only lasted 20 to 30 seconds about 6 times and it has not happened since I took my morning 30 mg of prednisone....I am wondering if this could be a symptom of the GCA I may not have returning or something unrelated....One thing I have learned from all the reading I have done here is to expect the unexpected and taper carefully and slowly!

[SnazzyD]

Keep and eye on it. At 30mg having started 8 weeks ago any GCA might start to creep out from under the rock. However, you might be suffering from the Pred induced dentine hypersensitivity. If you ate or drank something that was cold or hotish just before, that may have been it. I became super sensitive to warmth and had to eat and drink tepid to cold things for a few years. If it was a shooting pain that came in a cluster and then stopped, it could be the trigeminal nerve due to local inflammation at the side of the face or in the nerve. Other than those, I’m out of ideas.

[spoof99 in reply to SnazzyD]

yes we will be watching carefully, I don`t think it was due to eating or drinking I was just watching tv and just out of the blue it happened....we will see what happens in the next few days on 30mg I am more worried about the 20 level as it seems to be the level that people have issues if the GCA is still lingering....

[DorsetLady PMRGCAuk volunteer in reply to spoof99]

I am more worried about the 20 level as it seems to be the level that people have issues if the GCA is still lingering....

You can have issues at any dose if you go below the level your GCA needs… and it most certainly is still lingering - and will be for some considerable time.

Unfortunately it doesn’t just disappear because you are on Pred … the medication is only working on the inflammation produced by the underlying disease…

[Obscureclouds in reply to spoof99]

It may depend on how quickly you’ve been told to taper. From my first consultation I was on a schedule which said reduce by 10mg every 2 weeks. My gut feeling was that this would become too big a jump as I continued to decrease but I couldn’t get any response from rheumatology to several requests for further guidance. I was feeling really quite fit and well and full of energy at 30mg but a few days after dropping to 20mg started to get really tired and blurry eyed ( my major symptoms on diagnosis) and after a week, clicking in my jaws and head, extremely fatigued and generally unwell. I wish I had followed my instincts to only drop to 25mg as this really set me back. I decided to go back up from 20mg to 25 for a week and then taper more slowly after staying on 20 for about 4 weeks more to make sure my improved level of fitness would be maintained. So far I’ve been fine tapering ever since and am on target with the revised schedule detailed after my second consultation.

[piglette in reply to Obscureclouds]

The trouble is we think the rheumatologist is the expert and knows what they are doing!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Another problem is, so do they😳 and whilst some do, others… ????

[piglette in reply to DorsetLady]

😂😂😂

[spoof99 in reply to DorsetLady]

at this point we are not sure I have GCA, the neurologist and Optomalogist say yes to GCA but the Rheumy is not convinced and it`s her call...It appears her plan for me to taper until I have symptoms again and then address it...Hopefully I don`t have the issues with my eyesight like last time.

What I do know is this all started 2.5 months ago it started as slight discomfort in the legs and arms for a few days then the vision issues started and then the pain in the legs and arms got progressively worse to the point that I could hardly walk or stand and I was eating Tylenol like candy....The original 60mg of Prednisone made quick work of the pain....I really don`t care to go through all that again!

[DorsetLady PMRGCAuk volunteer in reply to spoof99]

That doesn’t help… but I’d be more inclined to go with neurologist and in particular the ophthalmologist until definitely proven not GCA… what is Rheumy thinking it’s then? PMR?or something else.

Whilst “tapering until you have symptoms again” may work for something things..it could be rather dangerous in GCA…but then it’s not her sight that’s under threat is it?

Sorry you are having to go through this stress and uncertainty.

[spoof99 in reply to DorsetLady]

She has never mentioned PMR...the first alternative that she mentioned was Spinal stenosis and this is because of the leg pain and on going tired/heavy feeling I have with my legs...now this leg issue seems to be slowly getting better...

Just to add I have never had any issues with my back, I have another scan scheduled for next Thursday that will focus on the neck down.

[Clarinet1234]

I was due to have my annual infusion (first one ) next Monday but have developed discomfort in my teeth where I have two crowns. I have postponed the infusion until I see my dentist. The discomfort is worse when I wake up and improves later during the day. I am new to all of this. Any suggestionsx

[PMRpro Ambassador in reply to Clarinet1234]

I suggest you post this as a new thread - few will see it here in the middle of an estblished thread, people don't tend to read all the responses or go back (except for DL and myself!)

[DorsetLady PMRGCAuk volunteer in reply to Clarinet1234]

Ditto to PMRpro’s comments ..

[Sunburst001]

Hi spoof99. I started having hypersensitive teeth after about 2 months on Prednisone - one month @ 60mg and one at 50mg. First just in the upper teeth and then adding in the lower. Mine is in response to cold food or drink. Almost anything from the fridge can make my eyes pop out of my head. I often take Paracetamol to allow me to eat salad for lunch. Initially the pain was only following food or drink - now it’s also there at a lower level all the time. I’m using a Sensodyne toothpaste - dentist suggested not to rinse when finished cleaning.

I saw the dentist again today as pain at a level where I was convinced I must have some cavities - fortunately I don’t. He suggested using Tooth Mousse - and putting some inside a bite splint (just happen to have one from earlier TMJ) issues. That would hold the mousse with better contact and for longer. Tried it this afternoon while WFH and I’d say it was helpful.

I’ve also noticed that the surface of my teeth is changing. I understand that Prednisone can make your saliva more acidic and therefore can impact the enamel on your teeth. Dentist suggested a baking soda mouth wash. Roughly 2 tsp baking soda in 600ml water - holding in mouth for a few minutes - a few times a day. Have yet to try this.

Cheers

🌻

[spoof99 in reply to Sunburst001]

with me it is not sensitivity, I can drink hot or cold and even had some ice cream with no issues It just happens very late in the day and early in the day and after I take my dose of Prednisone there is no tooth pain through out the day....

[Oddmanout]

The only time I have not had a relapse is when I tapered very slowly. I know 'very slowly' is open to interpretation but in my opinion if you think the jump is too big then it possibly is. As frustrating as it is, I would rather take longer to get to my lowest needs level.

[Flashback]

interesting as I had similar in tooth which ended with apalling nerve pain in side of neck teeth and side of head . Optician said eyes fine and gp put me on 60 Pred up from 5 mg until I could get U Sound which I had on Monday . However as I’d been on 60 for a week already they said it would be difficult to see if it was GCA .

They did a thorough U Sound but everything looked fine .

Suggested I dropped to 30 Pred and down by 5 every 5 days .

The high Pred makes me very shaky and spaced out so happy to reduce . The bad pain never came back but have a tight feeling in upper and lower teeth and jaw definitely aches but on and off all day not necessarily after eating .

I had Lyme in Autumn and know a lot of Lyme issues mimic Pmr .

[spoof99 in reply to Flashback]

Mine is the lower right side as well and I never had these issues before, I guess it could be a new dental issue but I have my doubts!

[Flashback]

Had dental X-rays and they said all good so must be another symptom- tiresome

[Obscureclouds]

Further to my previous post in case GCA is causing your problem. Like Oddman says my slow taper after going from my temporary increase of a week back at 25mg was very slow. I went back down to 20mg by alternating days between 25mg & 20mg then increasing the days at 20mg however I then read a few on line articles that said that GCA/LVV didn't react well to this and it was better to have a consistent dose so I asked the GP pharmacist to prescribe a supply of 1 mg Pred so I could make a gradual decrease at 1 mg at a time and once I got down to 15mg I did 3-5 days of reducing by 1/2 mg taking heed of comments I had read on this forum. The new plan from my Consultant says to stay on 10mg until May then reduce by 1 mg every two months so my plan is after I get to 9mg to try 1/2 mg per month - all a bit trial and error til we see what suits us all individually. (Apologies if you have ready this before on one of my other posts but thought I'd just share my experience) Hope you get your tooth problem sorted one way or the other and have piece of mind

[Flashback in reply to Obscureclouds]

thank you for that info . How long did you give yourself to go from 20 to 15 ?

Two weeks ago I was on 5 and feeling almost normal when the head pain started and they put me up to 60 just in case it was Gca .Such a huge leap and I even got a buzzing in my chest like there was a mobile phone ringing in there . So bizarre . Asked about it at the consultation but they thought it could be my stomach ? Not sure I agreed . However anxious in case severe pain comes back but interested in the dental sensitivity thing as it is all round my mouth .

[Obscureclouds in reply to Flashback]

Flashback in reply to your question - After staying on 20mg for the month I took between 5 and 6 weeks to go down from 20 to 15mg but that was longer than it might have been because I had cellulitis for a couple of weeks or so and didn’t want to cause any other problems by making a reduction whilst on a course of antibiotics. Ref my previous post I note an error in that I introduced the 0.5 mg reduction after 13mg not 15. I’ve not had to experience having a big increase to Pred after tapering down so can’t comment on what effects that might bring but I have had so many random things come my way I do find it difficult to know what is due to symptoms of the vasculitis, what is Pred and what is something entirely separate. When I was first Ill I was put on 30mg of Pred but had to stop after 5 days to give a clear week before a PET scan at which time I really bad jaw pain when eating or cleaning my teeth. After diagnosis of GCA/LVV and going on 60mg Pred this eased off after a couple of weeks and fortunately I haven’t had any further pain or sensitivity affecting my mouth so far 🤞 so hope you can find a solution to what has been causing your symptoms. The bizarre feelings in your chest must have been scarey.

[Flashback in reply to Obscureclouds]

Thank you . I’ve found a paper on steroid induced dentine sensitivity so I suspect it might affect your jaw too and cause pains there . At the moment it just all feels tight but comes and goes and not necessarily while chewing .

The steroids make me feel awful and as I didn’t really have much pain Apart from the dragging neck pain which the Pred got rid rid of I sometimes wonder if I’d just be better without it .

[DorsetLady PMRGCAuk volunteer in reply to Flashback]

I’ve found a paper on steroid induced dentine sensitivity so I suspect it might affect your jaw too and cause pains there

Always very useful when you find an article that relevant if you can link it… then it’s on here for future reference. 😊

[PMRpro Ambassador in reply to DorsetLady]

sciencedirect.com/science/a...

I think I linked it somewhere recently ...

[spoof99]

Very nasty stuff these steroids, obviously they help with PMR and GCA and a whole host of other symptoms but at what cost....when I was getting ready to turn in last night I of course noticed the pouch of fat that I have grown around my neck and add to that a lovely fat ring that is about 1.5 inches wide and runs from one side of my collar bone to the other...and lets not forget the lovely hump the size of my fistI have grown between my shoulder blades.😠

I can only imagine what it is doing to me on the inside...Last night was a rough night very little sleep and I was very congested with a cough and wheezing badly very similar to the symptoms of pneumonia....It`s like every day it`s something different, nasty stuff!

[PMRpro Ambassador in reply to spoof99]

Not that nasty - on the inside they are combatting longterm low (or not so low) level inflammation which is a risk factor for many other things including cancers. They save lives and sight - GCA can cause strokes, MI and total and irrevesible loss of vision, And they gave me my life back - avoiding severe depression and disability. They aren't all that bad.

You can often reduce the fat deposits by cutting carbs - many pred effects CAN be mitigated or avoided,

[piglette in reply to spoof99]

Steroids are a wonder drug. They do have side effects, but so do virtually all drugs.

[Obscureclouds in reply to spoof99]

Do you know that these issues are down to Pred? I can only agree with Piglet that Steroids are a wonder drug and certainly saved my life with a previous autoimmune reaction following my flu jab. After 5 weeks of battling in hospital while a host of specialists tried to find out what was wrong with me my body finally gave up. I was on increasing oxygen support, couldn’t eat, sleep, barely able to move or speak for 3-4 days so my husband went home waiting for “that call” I was then given IV Pred and instead I rang him in the morning to say I was sitting up in bed waiting for my breakfast and feeling great. Almost overnight my markers had returned to near normal levels, I was off oxygen in 5 days , my lungs cleared of infiltrates and within a week I was able to go home on 40 mg Pred which I tapered off in 5 months, I had thinning skin but can’t say I had anything else I would describe as a negative side effect. I therefore find it hard to say anything against Pred and it certainly then gave me back a quality of life when diagnosed with LVV after being hit with extreme fatigue etc last July/August. Apart from my thin skin and increased cholesterol I don’t think I have many side effects I would attribute to Pred. I tend to think the oddities I’ve experienced are more likely to be down to GCA/LVV or something else I’ve picked up (admittedly I might not have done so had I not had GCA/LVV or been taking Pred) but it is so difficult to say and of course age also plays a factor in such things. Sorry you seem so disheartened I do hope things will get better for you soon

[spoof99]

Oh I get it they saved my eyesight and do a lot of good for many people, I am just tired and frustrated....it has been a challenging 6 months....

[DorsetLady PMRGCAuk volunteer in reply to spoof99]

I am just tired and frustrated....it has been a challenging 6 months....

Could have been even more challenging if you were dealing with sight loss as well..

[PMRpro Ambassador in reply to spoof99]

Would probably have been a lot MORE challenging without pred!!

[Flashback]

Yes that’s the paper and appreciate the Pred is a lifesaver just need to get to lower levels so not spaced out . I also wonder if the dentine sensitivity could also lead to sensitive scalp.

Gca is frightening prospect with potential eyesight loss .